Informed consent is missing from Pap smears and cervical cancer screening

The American College of Obstetrics and Gynecology (ACOG) has just revised their guidelines for Pap smears under some pressure. This resulted from an Annals of Internal Medicine article which documented that only 16.4% of gynecologists followed the College’s prior guidelines. Most did more screenings than indicated, the worst record of the specialties tested. But the ACOG still recommends that nearly all women obtain regular screening at intervals of 1-3 years.

The facts are that cervical cancer is a rare disease in the US, a point which is never made. The American Cancer Society (ACS) predicts that there will be just over 11,000 cases in 2009. There will be nearly as many cases of testicular cancer, 8,400. In comparison both breast and prostate cancer are just under 200,000. Most women have been led to believe that cervical cancer is rampant and they need yearly screening to prevent it. Testicular cancer however, is rarely mentioned. Most physicians don’t even bother to recommend that young men self-examine.

Cervical cancer was once more common in this country and that accounts for some of the disparity. Pap screening has helped reduce the incidence, but far more is now known about the disease than when the Pap smear was introduced. Cervical cancer is in essence a sexually transmitted disease (STD) caused by the human papillomavirus (HPV). Thus any woman can estimate her personal risk. It’s high if a woman has had multiple sexual partners. With prior negative Paps it’s low if she abstains or if she is in a long term mutually monogamous relationship. The newer HPV DNA test will further increase safety.

For comparison’s sake, HIV (AIDS) is an even more dangerous STD with a five times greater incidence than cervical cancer. Yet no one ever suggests that everyone be tested for HIV, and there are laws in many states restricting testing. Testing is suggested only for those at risk, but this tactic is never used for cervical cancer.

I have seen a spontaneous outpouring of sentiment from women who are angry that the facts on cervical cancer have been hidden from them. They are pushed into getting Paps, but never told the pros and cons of screening. Never mentioned are the high incidence of abnormalities that resolve spontaneously, negative biopsies and colposcopies. It’s an uncommon doctor who even advises that every 2-3 year screening is considered appropriate in low risk women. My wife has had about 45 negative annual Paps and still her doctors haven’t said she can skip any. There are many recent recommendations suggesting that men be carefully told the options concerning prostate screening. We are just beginning to see that for breast cancer screening. But for cervical cancer screening there has been near silence on the issue.

Informed consent on cervical cancer screening is completely lacking in this country. Women are told that they need Pap tests, but rarely told if they might not need them or asked if they want them. The ratio of negative biopsies and colposcopies to cases of cervical cancer is very high given the rarity of cervical cancer. If women are given brochures, they are for the sole purpose of convincing them to get regular testing.

The negative aspects of mass cervical screening are never mentioned. Women should be given the facts and allowed to decide for themselves based on their individual risk benefit ratio whether or not they need regular cervical cancer screenings. The ACS and the ACOG could do a real service by providing pamphlets to providers’ offices that fully explain both the pros and cons of testing. Then let each individual woman decide for herself.

Joel Sherman is a cardiologist who blogs at Medical Privacy, A Patient Oriented Discussion.

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  • SarahW

    In addition to the all Dr. Sherman outlined, there is also frustration and anger by women who are denied oral contraceptives and refills for oral contraceptives unless they submit to a pap smear at least yearly.

    You and I know why this coercion is used, and I think patients will not stand for it any longer.

  • Catharine

    I beg to differ. The prevalence of HPV infections is HUGE. The benefits of screening (pap smears) FAR outweigh the costs, considering a grade III result is easy to treat — especially compared to an independently presenting case of full-blown cervical cancer. Frequent pap smears are one of the few things we’ve done right in women’s health. Logically, it doesn’t make sense to say that because regular screening for x is conducted but regular screening for q,r, and z is not conducted, then we needn’t screen for x so regularly. Perhaps we should do a better job of screening or q,r and z instead.

  • BD

    Considering that it’s essential for physicians to consider cardiovascular risk factors (very relevant) before prescribing BCPs, it’s fascinating that so many require a pap smear (completely irrelevant). Furthermore, I’d argue that internal medicine/family medicine PCPs are far more qualified than the average OB/GYN to diagnose and counsel patients regarding cardiovascular issues… after all, that’s a huge part of PCP practice, and it’s an area where good PCPs shine!

    (Incidentally, I have never experienced this phenomenon, as I have never used hormonal birth control.)

  • Anonymous

    I am a medical student who just did the rubber pelvis pap smear about two hours ago for the first time. I only want to point out that your statement “For comparison’s sake, HIV (AIDS) is an even more dangerous STD with a five times greater incidence than cervical cancer. Yet no one ever suggests that everyone be tested for HIV” is false. We were instructed that along with a few other STDs that everyone should be tested yearly on an opt-out basis.

  • Liz, UK

    I couldn’t agree more….
    No one can say the benefits far outweigh the risks FOR ME. It is unacceptable to suggest that others can make that call for me….when my health is on the line.
    To suggest otherwise is basically saying women are third class citizens and can be demanded and ordered to have optional cancer screening. If you look at the medical literature, informed consent IS required for all cancer screening, yet women, regardless of risk, are railroaded and coerced into testing every day. The vast majority of women will not get cervical cancer and all women have a right to protect themselves from harmful over-treatment.
    You have a greater chance of getting almost any other sort of cancer.

    A low risk woman may chose to accept the tiny risk of cancer rather than the huge risk of over-treatment. Yet she’d have to fight to have her decision accepted…doctors prefer to screen everyone regardless of your likely benefit or the high risk of over-treatment.
    I’m so tired of the hysteria surrounding this cancer, which is out of all proportion to the risk. I have friends who smoke heavily and they walk around worrying about cervical cancer…..lung cancer is COMMON and kills FAR more women than cervical cancer…yet because of the messages we receive constantly, many women focus on cervical cancer and forget about more immediate and likely health risks and issues.
    Our doctors are actually paid by the UK Government to hit high screening targets (the same happens in Australia)…where is the ethics in that and respect for a woman’s right to choose? It has resulted in a lot of unethical conduct and the General Medical Council have focused in more recent times, on the need for greater honesty and respect for a woman’s right to choose. It would be unacceptable to bully a patient into a colonoscopy, but it’s fine to do that with smears….even when there is a fairly high chance it can lead to unnecessary biopsies, that can leave you with health issues.
    There has been some progress in the UK in recent years. Angela Raffle, UK cancer screening expert, released some figures that were published in the BMJ that highlighted the very low risk of this cancer….1000 women need regular screening for 35 years to save ONE woman from cervical cancer. Hardly an epidemic! In fact, a low risk woman has a risk approaching zero, but even 3 yearly testing will send 65% of women for colposcopies and biopsies. (very few will actually have a problem) The more frequent the screening, the greater the risk of over-treatment.
    This screening doesn’t add up for some women. Other women will be happy to have unnecessary procedures to reduce the risk…but one third of women diagnosed with cancer will have had a recent normal pap smear…so screening doesn’t offer complete protection.

    The situation in the States is totally out of hand …demanding pelvic & breast exams and annual smears to get the Pill!!!
    There is no sound evidence for the need for breast and pelvic exams in asymptomatic women at any time…fortunately, our doctors haven’t tried that one! Cancer screening has nothing to do with birth control.
    Even your medical associations agree with that, but your doctors have decided to create their own list of demands and restrict access…exams and test in exchange for the Pills. I’m not sure how your doctors get away with that….if women refused and took action, things would change very quickly.

    The States screen women not yet sexually active when they turn 21 (I have no idea what that is about!) and screen millions of women who’ve had complete hysterectomies for non-cancerous conditions….oh, and I’ve read that about 25% of elderly women are still screened in the States. Not to forget you also massively over-screen women and have very high rates of unnecessary procedures.
    What happened to women’s rights….is informed consent and honesty something that only applies to men?

  • Classof65

    I’m one of the women whose doctor would not refill my prescription for birth control pills without a Pap smear. I am a little angry to find out now that those tests were not necessary, especially since I had little money and my health insurance did not cover the cost of the contraceptive. However, I’m not sure that anyone knew for sure that HPV was the cause of cervical cancer back then, so I’m really more confused than angry. Since we know now that having multiple partners increases the chance of getting HPV, it’s probably a good thing for young women to be tested on a regular basis — especially since they might be too embarrassed to admit to multiple partners…

  • Debra

    I was surprised to eventually find out from a doctor friend just how small my risk of cervical cancer actually was….
    Women have been lied to about all of this testing and the risk posed by this cancer. My risk was too small to worry about. I was very concerned to find out about the high chance we all have of an abnormal pap smear. Almost all of my friends have had abnormal smears that all turned out to be clear….nothing to worry about at all. Of course, in the meanwhile, I had friends writing their Wills, in floods of tears, unable to sleep or eat, worried sick…this is unfair and very bad for your health.
    Our doctors all know the odds of a colposcopy are very high and the risk of this cancer is low even for someone high risk, yet they don’t tell us…they actually go out of their way to deceive us.
    We all have no idea of the facts behind this testing and that is shameful.
    We should all decide for ourselves whether we’re interested in this colposcopy gamble…if our chance of getting this cancer is the same as being hit by lightning, why shouldn’t we be able to pass and avoid facing a very unpleasant procedure?

  • Rae

    I have to scratch my head when I think about what we’re doing to our healthy women. Intimate exams, sending thousands to have cells burnt off their cervix or cutting out or freezing parts of their cervix….some women face that more than once in their lifetimes. Then I look at how many women would get this cancer in a totally unscreened world and it’s very small…about 1% to 1.6%
    I’ve read that almost all American women will have a colposcopy or some other treatment during her life.
    We’re processing thousands of women every year to get to 1-1.6%….
    Does this make any sense at all?
    I know a woman who has had abnormal smear after abnormal smear and several treatments and her smears are still abnormal. No cancer or anything concerning has ever been found. The doctors thought a hysterectomy was the best thing…instead she’s walked away and is sorry she allowed doctors to pressure her into the test in the first place. She has no idea what she’ll do now…her own sanity dictated she had to get off this destructive cycle of testing and treatment.
    We never hear about the bad outcomes, just the showcasing of the few women who were saved or who got cancer and didn’t have pap smears. (naughty, naughty)
    It is very one-sided coverage…almost a conspiracy to brainwash and indoctrinate. I think the day this testing was introduced was a black day for women’s bodily automony and our rights.
    Bravo, Dr Sherman!

  • Maggie

    Until doctors are forced to respect informed consent and the medical associations and governments respect a woman’s right to screen or not, women will continue to be treated badly. At the moment women have no rights with cervical screening. Try avoiding screening in the UK…doctors are paid very well to screen a high percentage of their patients and your informed consent just gets in the way. Doctors don’t care about cancer or your rights or health, just targets. We have women being stood over by one or more doctors until they agree to screening, being harassed by phone and letter, being asked to leave a medical practice unless she agrees, being asked to sign a waiver if she doesn’t want testing….
    Does this sound like cancer screening to you? Can you imagine doctors behaving this way for anything else and getting away with it for even a week? Can you believe that governments and medical groups endorse and openly encourage these practices?
    I’m deeply ashamed that in 2009 women are still treated in this way and the majority seem quite happy about it.
    Don’t kid yourselves…cancer screening has never been “offered” to women. Women have been subjected to an aggressive and deceitful campaign to undermine their rights and health at every turn…
    Informed consent – don’t make me laugh!

  • NT

    So many women have LEEP and cone biopsies that we feel like this cancer is all around. I now know this isn’t true…the test is wrong more than it’s right and almost all of these nasty treatments are not needed…If a woman has cells taken off at 24 or 26, chances are it was nothing to worry about anyway….yet most of these women think they had cancer and shout the praises of the smear from the roof tops. In fact, almost all of these biopsies and LEEP are not really necessary….
    My Dutch cousin thinks we’re insane treating young women like that…they don’t even have testing until they’re 30 because if they did, the same thing would happen…lots of LEEP and biopsies for things that would never turn into cancer. Why do Dutch doctors care about women and seek to protect them, when our doctors do all they can to hurt us?
    These are perfectly healthy women being put through awfully invasive and painful treatments when the odds they have cancer are nil or very low. If we knew that this cancer was rare and the risks of having painful treatment is high for everyone…more women would say No to testing. It seems we don’t matter though…
    Any price to the health and well-being of well women is worth it in the mad quest to stamp out this rare cancer.
    I have lost respect for doctors as a result of the way they treat women. I avoid them at all costs…how could you trust somebody who thinks all of this is the right way to practise medicine?

  • Jane S

    Whether this cancer is common or not, women, like men, are entitled to make their own decisions about screening. I’ve never understood why cervical screening is considered above the law and ethical standards. I have never been asked whether I want screening or been offered information. It was almost ordered and I was chastized when I said I’d need time and a lot more information before agreeing to testing.
    It is up to each woman to ensure that her rights are respected and take it further, if you feel you’ve been treated badly. If you can’t work with that Dr, find another one.
    I’m a prosecutor and spend my life weighing-up evidence. If I were a high risk woman, I might follow a foreign program that gave me more protection from excessive treatments and false positives. The risk of that is much greater than the risk of cervical cancer for every woman, low or high risk. A low risk woman needs to look at the odds very carefully before having smears. Once you have a false positive, most women feel compelled to take the next step to colposcopy.
    I support any women who wants smears or mammograms. I do think women are entitled to make their decisions without fear and doctors tend to use fear as a weapon against women. We need far more honesty so women feel in control of their health and bodies. When screening is forced through pressure or to get birth control, women resent this intervention. If women are given information and permitted to adopt an interval that suits them, it would be better for all women. I have seen a shift in women over the years…more women are resentful and angry and some are estranged from their physicians and now receive no healthcare and others are just afraid…of their bodies, testing and treatments. One of my colleagues said many women feel this testing is “done to them”…they are not active participants in a cancer screening test. This isn’t acceptable and is the reason many women no longer have a working relationship with the medical profession. It is a source of great sadness that all of the women doctors we have these days also disregard informed consent. They should be our allies, not part of the problem.

  • Katie

    Some doctors seem delighted they can use extreme pressure or extortion to force you to expose yourself in the most intimate way. It is a very difficult exam for many women and we should never be forced. Being a Dr does not give you the right to force exams like this…
    I’m sure some doctors enjoy the power this screening test gives them over women.
    I know when women give in to doctors like that, they do feel violated and traumatized.
    If something like that happens and you’re unwilling, it is an assault. I can’t imagine any man being forced to have a rectal exam to get meds and the need for a rectal exam would not take over every consult for unrelated matters.
    No one can deny that many women are forced to have this exam and test. Far from informed consent, it’s forced on us. The Dr intimidates you or forces you if you want Pills. The way doctors treat women is not a doctor-patient relationship…it’s more dictator/abuser and victim.
    I now loathe doctors and haven’t seen one in 15 years.
    My chance of good health is higher when I stay away from these people.

  • Leah,Birmingham

    I think that is happening more and more…I know my mother doesn’t go to the Dr because he gives her a hard time about pap smears. Mum doesn’t want them and thinks it’s all a bit ridiculous. In all her life and Gran says the same thing….they’ve never heard of any woman getting cervical cancer. Mum can’t understand why this is such a big deal for doctors. It’s like doctors are pretending it’s a problem to make money from women. Mum has diabetes and I worry about her treating herself. It seems stupid to me that a woman doesn’t feel comfortable seeing a doctor about a real and serious health problem because she’s hassled the whole time about a rare cancer. Mum and Dad were teenage sweethearts. I doubt she has even been infected with papilloma virus. I think doctors should lay off…we’re all sick to death of it. They should make money some other way. I’m preparing myself for the hassling to come….25 is the time of the first “invitation” although it’s not really an invitation at all. It’s more like a summons. I’m not sexually active yet and won’t even think about this test until I decide it’s something I need. If I don’t get to that point, I won’t be having them. I think women should be able to see doctors without having to fight off this test the whole time.

  • PDavis

    I understand what you’re all saying.
    I had a bad asthma attack recently and decided to see the family doctor first thing in the morning. I had the day off work. I barely sat down when the doctor said, “when was your last pap smear?…we can take care of it right now”….
    I explained that I was more concerned about my asthma. The back and forth continued – all about smears. It was only when I got up to leave that the Dr finally moved on to my asthma. There was no giving up though….at the end of the consult it was mentioned again. I almost shouted, “I don’t feel well and don’t want a pap smear!” I felt the consult did not really deal with my asthma as that topic was rushed.
    I was spoken to like a stubborn child. Our doctors are paid very well to test their female patients and it seems to be the main reason they go to work these days. Every other health problem is less important. I think the government should stop paying doctors to screen all of their patients. It means doctors concentrate on the money and don’t care for their patients properly and they don’t care whether women want testing or not….I think the target payments should be gotten rid of…they are causing this unprofessional conduct. As I left the receptionist asked we when I wanted to schedule my pap smear. I said work was waiting and got out of there…I know there will be a letter and maybe a phone call in a few months. I feel pursued by doctors about smears…like a fugitive on the run. A friend is a receptionist at a doctor’s rooms and told me about the incentive payments – she says they chase women as soon as they qualify so pap smears become a habit. They have team meetings about the women who don’t have them or are late and make plans as to how to pressure them into them like flagging their files to ambush them when they come in for something or phoning them and sending reminder notes to the late ones.
    I think this testing has gone too far. We should have the right to go about our lives and if we want testing, we’ll ask for it. I think the chasing and pressure should be stopped.
    The really strange thing…my mother and other older women don’t get chased for mammograms yet breast cancer is a very common disease. Doctors don’t get paid to screen women for breast cancer so they don’t seem to care. It explains their conduct anyway….

  • http://www.drmintz.com Dr. Mintz

    Screening for any disease, whether a pap smear for cervical cancer, rectal exam for prostate cancer, mammogram, colonoscopy etc. is a complicated decision. With the recent release of changed guidelines for cervical cancer and breast cancer, the public is now becoming more aware of this issue. The best thing for both patient and doctor is a conversation about the risk and benefits for both screening and not screening. This is now more important than ever since now there are several guidelines with very conflicting recommendations. The problem is that our current health care system reimburses quite well for procedures and diagnositc tests. It does not reimburse well for important conversations. This is why patients who use their health insurance to see their primary care physician (as most people in the US do) have only brief and what must seem like rushed visits with their doctor. True informed consent about these important matters will only happen if we change the current structure of our reimbursement system. Paying doctors to discuss the pros and cons of screening, testing, and treatment will actually save money because (especially as evident by many of the comments already posted by women angered by likely unnecessary pap smears), it will likely lead to fewer tests and procedures.

  • Laina

    I imagine that this is one of those issues that is affected rather seriously by the risk of being sued for malpractice. This might be especially the case for OB/GYNs, considering how much malpractice insurance costs for them. If a patient refuses pap smears, gets cervical cancer, and dies, her family might very well sue the head off that doctor for not trying harder to convince that patient to agree to a pap smear, considering the fact that pap smears are incredibly effective at detecting the cellular progression to cancer. Not a reasonable excuse for not allowing women to exercise their autonomy, but a potential explanation. Perhaps it is not the doctors, themselves, but the system that prevents them from providing good care because of the (realistic) fear of extreme financial and legal consequences. From what I have gathered (as a medical student and former employee of many OB/GYNs), this is particularly a problem in this medical field.

  • Margaret

    My husband was recently asked whether he was thinking of having prostate screening; he’s just turned 50. His doctor gave him some information sheets and suggested he think it over and let him know how he felt, if he wanted to have the test and to ask any questions that might aid his decision-making. Prostate cancer kills lot of men, the number is enormous really. The doctor was not urgent, frantic, demanding nor did he attempt to scare my husband and let’s face it, you could with that large number of deaths.
    Ask most women of their experiences with cervical screening and it’s another mattter entirely. Doctors use words that imply it will happen, they use words like “should”, “must”, “will”….it is presented as a given, you will have screening. It is this lack of respect for the right to say yes or no that I find unacceptable. Why are men treated so differently on the issue of cancer testing? Why don’t doctors feel it’s necessary to even mention pros and cons? I was given a pamphlet many years ago that gave no real information, it was just a promotion of the test. No one has ever asked me whether I wanted the test or had any questions. It seems that doctors all decided that they would not give women a choice, they would apply pressure until we all had the test. I don’t know why this was the thinking for cervical testing but would be considered unethical for any other sort of testing. I did read once that it was a long shot putting so much money into this test. It’s a rare cancer and they knew if they didn’t screen a very high proportion of women they couldn’t justify the money being spent on advertising and other things. It seems informed consent stood in the way of their goals, so it was put to one side. The numbers of women who get abnormal smears and are sent for more testing is alarming. It does seem like we’re trying to kill a flea with a cannon. It does concern me that doctors become almost offended if you dare suggest you have concerns about the test. I’m wary of that, if it were all legitimate, they wouldn’t feel threatened by our questions. It’s taken a long time for someone to notice that informed consent is lacking for cervical screening and let me tell you, it always has been…

  • Susanne

    I am still a virgin at the ripe old age of 33 — yes, there are still a few of us out there, believe it or not — and thus have never had to fight for a prescription for BC pills. I have been subject to some of the treatment that others here have faced when going to the doctor, though, and I think it is very wrong for healthcare providers to use shame, pressure, scare tactics and outright bullying to force women into having these exams while also not disclosing any of the downsides. I also am outraged by the practice of opportunistic screening on women who visit the Dr.’s office for unrelated reasons.

    I went to the Dr. several months ago for what I thought was a lump. Everything turned out OK in that regard, but it was what else that happened at the doctor’s office that was truly upsetting and angering to me. Having recently lost my mom to brain cancer, I’ve become quite terrified by anything having to do with cancer. I was very worried when I made the appt. with the OBGYN and only grew more upset as I went to her office. I was told “Shame on you!” by the receptionist when I mentioned my concerns and nervousness about being there. I guess a woman of 33 is supposed to be too old to be scared about going to the doctor and too old to be scared she might have something wrong with her. I’ve usually found that if I tell someone I am concerned about something, they are sympathetic and try to be reassuring, but the receptionist was anything but that.

    If the receptionist’s attitude wasn’t bad enough, I also was kept waiting in the exam room for more than two hours (doctor was not delivering or in surgery — just running late). While I was waiting, the nurse came in a began laying out tools for a pap and pelvic exam. I had not made the appt. for that reason, never said so over the phone and never said I wanted such an exam once I had arrived at the office. I felt more upset when I saw her laying out those tools, as I was already a nervous wreck for the reason I had made the appt.

    I managed to talk my way out the exam by saying it was that time of month (true) and I was uncomfortable with cramps. The nurse and the doctor did not let me out of there without a stern warning and saying I should be far more concerned about having those tests done than about the reason I made the appt. in the first place. I just don’t understand why they had to do that. I was already a nervous wreck on account of the reason for my appt. and it felt almost as though they were taking advantage of the situation. They should not have done that. They should have attended to my reason for being there and left it at that.

    Also, I should mention that the exam table in said Dr.’s office was angled in such a way that it was in full view of the door and anyone who might walk back there and open the door. Anyone could have walked back there and opened the door to see someone’s body exposed. I think that is wrong and an invasion of patients’ privacy.

  • http://www.malpracticelawfirm.net jimeyers

    Cervical cancer was not rare in 1950 before the pap smear was introduced. The mortality from cervical cancer was reduced by 75% between 1955 and 1992. While invasive cancer is no longer common, HGSIL is and 90% of such lesions progressa to invasive cancer if not earlier discovered and treated. Negative biopsies bare no reflection on screening for cervical cancer but do raise question concerniing the competency of colposcopy. Punch biopsies do not threaten childbearing in the way a cone might. No cone should be done if a high grade lesion is not confirmed. A good colposcopist can find these lesions and sample them. I am unaware of any study confirming the there is a significant rate of biopsies of any kind performed for HGSIL pap smear where the biopsies end up not showing treatable preinvasive disease.

  • lazydaisy

    To Jimeyers

    75% of what? Could you possibly provide the whole number, to enable us to judge this risk for ourselves?

    Regarding levels of overtreatment, the UK’s Dr Angela Raffles has done some work on this – link http://www.guardian.co.uk/society/2003/may/22/genderissues.publichealth

    “For every death prevented, acccording to Raffle’s research, more than 80 women undergo further investigation and more than 50 are treated.”

    Also, even if cervical cancer rates matched those of heart disease (which I think is actually the biggest killer of women in the US?) this still would NOT justify withholding contraception to force complicity with testing, or the bullying tactics used on women. If the test and treatment is so incredibly accurate and risk free, and this cancer so incredibly common, why use threats, fear and ignorance? What do you stand to lose by being honest and gaining informed consent?

    Would you accept being treated like this by your doctor?

  • Sanderson

    If doctors can’t be trusted to dispense birth control responsibly and ethically, the power should be taken away from them. Women have a right to access reliable birth control. An unplanned pregnancy carries much greater risk. I know a few men who had early vasectomies because they didn’t agree with their wives being blackmailed to get pills. It’s totally unjustifiable given all medical associations, WHO and the USF&DA all say these exams and tests are not required for the initiation and continuing use of the Pill.

    I don’t think any facts can justify what has happened to women with cervical cancer screening. We all know this is unethical…we all know informed consent is not given a thought….yet it goes on and on.
    The 75% figure is misleading as well…figures are always presented as percentages in cervical screening as it sounds more impressive. The actual numbers are small…
    It was always an uncommon cancer and the death rate was dropping before screening was widespread. I think other factors have contributed to the continuing fall and screening is just part of the explanation. Prostate cancer takes many more lives yet few would agree that men should be forced to have digital rectal exams before they get a script or be pressured whenever they present…
    I would never write-off biopsies of any sort as minor procedures. Biopsies are invasive, painful and upsetting for many women. We also know that most lesions don’t progress to cancer – we don’t know what will or won’t and so every woman is treated. Things like heart disease and lung cancer take many more lives, yet cervical cancer takes the limelight. I think feminists initially pushed screening onto the agenda before it was properly evaluated…I think their efforts were premature and have backfired in a way. I think this is the most dishonest and unethical side of medicine and certainly, cancer screening.
    Looking at colposcopy and biopsy results released by Papscreen in Australia, most of the pathology is clear.
    No one can deny that over-detection and over-treatment is a huge problem with this screening. All of this is academic anyway, prostate cancer takes more lives and men are treated respectfully, women should not to subject to these abuses for a cancer that was never a threat to most women….it would still be unacceptable if cervical cancer were common. Any doctor that can’t see that should go back to medical school and do a refresher on ethics and professional standards.

  • BD

    >>If doctors can’t be trusted to dispense birth control responsibly and ethically, the power should be taken away from them.>>

    There are plenty of OTC drugs with some very nasty side effects (acetaminophen and any of the NSAIDs come to mind) but somehow we’re trusted with those.

    It would be interesting to compare the risk of dying in childbirth if one were to become pregnant to the risk of dying of cervical cancer. I shall have to look that up.

  • http://www.malpracticelawfirm.net jimeyers

    To LazyDaisy
    This is not the data you specifically requested because it includes incidence of cervical cancer and not mortality, however, Timothy Canavan cites Devesa SS, Silverman DT, Young JL, Pollack ES, Brown CC, Horm JW, et al. Cancer incidence and mortality trends among whites in the United States, 1947-84. J Natl Cancer Inst 1987;79:701-70. for the following:
    1940s- 32 per 100,000
    1980s- 8.3 per 100,000
    http://www.aafp.org/afp/20000301/1369.html
    This is the best I can do on short notice but there is considerable evidence in the literature.

  • Lucy

    “The ACS and the ACOG could do a real service by providing pamphlets to providers’ offices that fully explain both the pros and cons of testing. Then let each individual woman decide for herself.”

    Wouldn’t that be amazing? It’s almost funny to suggest, we’re so far away from that…
    The other Dr suggesting we chat to our doctor about the pros and cons of screening. I almost laughed…not many woman decide for themselves whether they “want” screening? We’re told we’re having screening, like it or lump it.
    I can’t imagine co-operation ever happening…doctors would throw real information brochures in the bin and carry on as before…if they don’t respect our right to choose, they certainly wouldn’t see informing us of the pros and cons as important…that just makes their job more difficult – we might be put off or ask questions.
    No…the usual thing is…
    No exam = no birth control, see how you manage with condoms! One doctor even suggested my marriage might be in jeopardy if I made my husband use condoms….psychological tactics as well!
    A trip to the doctor for an earache can include a penetrative vaginal exam unless you’re a strong woman and maybe even more…throw in a breast exam as well. The over-medicalization of women’s bodies means our bodily autonomy is not respected. We can be violated on a whim…let’s create our own set of rules – why not make a breast exam compulsory with a flu shot?
    Where are all the graduates that did well in medical ethics? The silence is deafening…
    I put myself into switched-on mode when I see doctors and try and control what happens in the consult. I found a Dr where I feel in control. It took some time but I eventually found one. Believe it or not, there are a handful of ethical doctors left out there….doctors who don’t believe they have the right to demand things from women – seeing a Dr for anything does not give them a free reign to over-examine.
    It’s worth searching for one…it can make a huge difference to your life. I make my doctor justify everything and if I’m unsure, no, thanks. I’m never rude, just firm…

    Try HOPE at Planned Parenthood if you don’t want pelvic/gyn/breast exams and annual smears a prerequisite for the BCP.

  • Catharine

    It seems many of you have some very unusual physicians. What did you do? Pick them out of the Yellow Pages?

  • Natalie, Melbourne

    jimeyers,
    I see your point, but we’re not talking about 200,000 women, we’re talking small numbers.
    If informed consent is respected for men and prostate screening, a very common cancer, then surely women should have the option to screen or not for cervical and breast cancer.
    I’m not the slightest bit concerned about cervical cancer, the risk is so small anyway, on top of my low risk profile. I’m concerned about breast cancer though. Like prostate cancer, breast cancer is common.
    I still feel it’s my decision to have screening though and as hard a decision as it was, I’ve chosen no breast exams or mammograms and I stopped self-examining years ago. If there is no solid evidence that it brings down the death rate, then “leave me alone” is my motto.
    I’d never presume to tell another man or woman what to do when it comes to screening…it’s a highly personal thing.
    I’ve looked for evidence that clinical breast exams make a difference and found nothing…just evidence that they lead to biopsies. I’ve had two of those during my self-examining days and enough is enough…
    If it doesn’t work or the jury is still out, I prefer to stay out of it. Having biopsies and treatment is no fun at all and I really think it’s an unhealthy way to live. I know after my biopsies, I felt anxious for some time and felt like a cancer survivor, like I’d had a cancer scare. In fact, they were false positives and I didn’t had cancer at any stage. Cancer screening does turn many healthy people into patients.

  • http://www.malpracticelawfirm.net jimeyers

    It absolutely should be a woman’s choice with full and accurate knowledge of the facts. Only 4 or 5 thousand women will die in America this year from this virtually 100% curable cancer. Several of these women have been my clients and have suffered horrible deaths from this curable disease and it has been my privilege to help provide for their families. Perhaps in my previous remarks I expressed some bias for this reason. Its for each woman to decide for herself what risks she will take and what harms she will accept to avoid risk.

  • Liz, UK

    Catharine,
    I don’t know where you’re from, but if you haven’t experienced the extreme pressure to have pap smears, you’re definitely in the lucky minority.
    I know what these women are talking about…I’ve experienced it in the UK. I signed a waiver and took myself off the screening registry to stop the pressure. It shouldn’t have been necessary, but it was the easiest way. I can stand up for myself, but young, shy or uneducated women wouldn’t stand a chance.
    The unethical conduct by English doctors is well known…you can read about it in this article.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1377516/pdf/jmedeth00314-0008.pdf
    Most of this conduct is caused by payments made to doctors when they achieve high screening targets. I think these payments should be scrapped as they conflict with informed consent.
    American women have an even bigger battle to avoid routine gyn exams and over-screening.
    Perhaps, you’ve been lucky enough to find a balanced Dr…
    I know there are a couple of high profile doctors in the UK that don’t agree with screening targets and respect informed consent. I have enormous respect for these doctors. They are the voices of balance, common sense, professionalism and sound ethics. Otherwise, it seems to be a constant battle to have your wishes accepted…whether that be no screening or a reduced schedule to protect yourself from false positives. It does become tiring and frustrating…
    I’ve found Australian doctors more moderate, although it might be different if you wanted birth control – this topic tends to come up then. I lived in that country for a few years and never hit a Dr who was rude or insistent, in fact, one doctor shared my concerns about screening.
    I know their doctors are paid to hit targets as well, so I imagine women would receive pressure to screen. It surprised me that there was little discussion of the risks of cervical screening in that country. Women don’t receive balanced information either, the brochures are one-sided and incomplete.
    I know they recommend screening for sexually active women from 18 and 2 yearly, so their women are over-screened and that explains their very high rates of colpocopy and biopsies. There is an article by Laura Koutsky that shows 77% of Australian women will have colposcopy and biopsies in their lifetime, most won’t have any problem at all. It was published in “Cancer Prevention” in Fall 2004, Issue 4.
    I think the lack of informed consent, over-screening, over-detection and over-treatment are issues in many countries.

  • Sam

    Laina,
    I think you’re right about malpractice…
    What I don’t understand….why aren’t doctors equally afraid of being sued when men refuse prostate cancer screening?
    Cervical cancer is uncommon, prostate cancer is very common….what was it? 11,000 cases compared to 200,000…
    Wouldn’t the risk be greater with a man refusing screening?

  • Laina

    Sam,
    I think the issue here is age and reproductive ability (which more often than not go hand in hand). Treatments for cervical cancer would more likely than not involve surgical removal of a significant portion of the female reproductive tract, and if this type of cancer strikes a young woman (or really, any woman of reproductive age), that’s a big deal, especially in the court of law. On the other hand, prostate cancer has a strong tendency to happen late in a man’s life. While men still can father children at that age, they are less likely to do so. Also, removal of the prostate wouldn’t necessarily impede reproductive ability. And if it did, men have the option of storing their sperm rather easily, whereas oocyte storage involves a series of hormonal treatments and injections, followed by a small surgical procedure.

    Please keep in mind that my comments are not intended to express approval of physicians’ denial of women’s autonomy, but rather a potential bit of insight into what it might be like from their perspective. It isn’t always just a bunch of mean heartless doctors who have no respect for people, a lot of the time they are just protecting themselves from the very real possibility of legal repercussions.

  • Erin

    I can understand how a physician might be influenced by past experiences.
    It’s no different to your patients taking other risks though and I think for lots of women the risk of this cancer is low. I sometimes wonder whether giving women brutally honest information might help…the over-generalizations either confuse or give people false hope. Pushing screening at everyone seems a bad way of finding a fairly small number of women.
    At University there were men and women who engaged in high risk sexual activities. I think they’d be high risk for STD’s and cervical cancer.
    Then there were those who had a stable BF or GF and always used condoms and others who stayed with and married their first love…these women would be low risk. Not everyone has multiple partners, men or women. If you haven’t been intimate with an infected partner, you don’t need to worry about cervical cancer. We desperately need a HPV test for men so women could insist a new partner get tested. In that way women would know they were safe from this cancer. It would do away with a lot of testing and unnecessary treatment.
    My husband and I were not sexually active before we met and pushing this testing at me with no risk information is very unfair. I know doctors don’t have time to assess every patient and this information is personal anyway…but if candid information were available and the decision left to each woman…low risk woman could make a choice and high risk would know exactly where they stand….they have the most to gain from smears.
    At the moment, they’re lost in the sea of misinformation and low or no risk women. You often hear, “if you’ve ever had sex, you’re at risk”…that’s not really true. There are risk factors and if a woman has quite a few, she’s the most likely one to get cancer. I think all the harm to low risk women is bad, we should be given some protection from the unreliability of this test. At the moment, most low risk women have no idea they have almost no chance of getting this cancer and may have biopsies for nothing. I dislike all things medical and would hate to have a cervical biopsy.
    If high risk women don’t want smears, you can’t do any more. The current message isn’t getting through though…a very promiscuous girl at Uni felt that multiple partners made no difference because a Dr told her all women were at risk, even virgins. I don’t think those statements help anyone.
    It seems even high risk women have a low risk of this cancer anyway….but they should be given the brutal truth. Multiple sexual partners or having a partner who has had multiple sexual partners and particularly, early sexual activity and unprotected sex, puts you at high risk of being part of that 1% to 2% who’ll get this cancer.
    If I were high risk, I’d probably be having testing as well. I’d try to avoid over-screening though, that serves no purpose.
    There are many things we choose to do in life that carry risk…mountaineering, smoking, binge drinking
    Being an adult means we’re responsible for our actions and decisions.

    False negatives happen as well…
    I read on another site that one third of the women who are diagnosed with cervical cancer have had a recent normal pap smear.
    The girl from college is probably still telling herself her risk is no greater than mine.
    I should add that I don’t judge any woman or man who chooses to have short-term relationships or multiple partners, but there are health risks with that lifestyle.
    I think having unprotected sex with a new partner is very dangerous. Placing greater emphasis on protection might be a good idea. Using condoms every time and restricting sexual partners really reduces the risk of STD’s. A Dr friend told me any new partner who has a sexual history should be checked out before you start a sexual relationship and that condoms give about 75% protection from HPV. A lot better than nothing…

  • lazydaisy

    Jimeyers

    thank you for providing the statistics – in one post you will have provided more information than most women will have received from their doctors.

  • Will

    I’ve noticed that…
    My doctor takes the time to explain things to me and gets my permission. My wife is told she can’t get any more birth control until she has her exam which includes a yearly smear. No explanation, no pros and cons and no asking for permission. A mammogram is the latest thing to be added to the list of things she must have before she can get her birth control.
    We think we’ve come a long way with equal rights, yet we’ve all known about this for years and done nothing about it. I’ll be going along with my wife to her next appointment and be asking for an explanation. Doctors have made cancer screening for women compulsory -cancer screening can never be compulsory! It should be every woman’s right to decide for herself whether she wants gyn exams, smears and mammograms. I think doctors have shown they don’t care about informed consent and even use the need for birth control to control women.
    If these exams and tests are compulsory to get your birth control, you’re hardly consenting. It’s not informed consent and I’d say there is no real consent. Thank you Dr for reminding all of us that something thoroughly unacceptable has been happening under our noses for years. I think many people incorrectly assumed these exams were necessary if you were taking birth control. That’s not true…all of this is about preventative medicine and screening. Medical groups need to warn doctors that action will be taken if this continues or birth control will be dispensed by a pharmacist. My wife hates these exams and resents being made to have them to get her birth control.

  • Amanda

    Isn’t it time to put the spotlight on the medical groups that strongly recommend these annual gyn exams?
    The problem starts there…
    If doctors are prepared to say these exams are important for all women, it’s a small step to forget about informed consent and demand smears before prescribing the Pill.
    The benefits and harms of these exams should be independently assessed and the findings released to women.
    Our doctors say these exams are of no or little value in a well woman and don’t recommend them. Yet all American women are STRONGLY advised to start these exams from 15 or 16 and continue with them every year for the rest of her life.
    Quite a difference of opinion.
    Women should be told the truth about these exams. When doctors in other countries don’t recommend these exams, women are entitled to know there is a least disagreement about the value of and need for these exams?
    Let women judge for themselves whether they want them.
    The study should cover the additional diagnostic testing caused by these exams.
    Informed consent is an issue all around the developed world with cervical and breast cancer screening. It’s not even acknowledged as an issue. (until now)
    America has the huge additional problem of women already being told they should or must have annual breast and pelvic exams.
    Given the facts and figures, I think many women would decide not to have them.
    I find it abhorrent to suggest that a healthy woman needs these exams. There seems to be a presumption of disease until proven otherwise. I wouldn’t be happy for my doctor to treat me on that basis.

  • Liz in Canada

    And what about the risk of injury or infection from Paps!

    In Canada also, women are regularly denied oral contraceptives until they have a Pap.

    EVERY test (especially internal & invasive) holds risk.
    Do not let them tell you otherwise!

    Something as seemingly innocent like blood test does too. A prominent musician was injured when a vial of blood was taken from him and the nurse moved the needle wrong… CT & X-rays hold risks…
    ALL tests have risks and it is up to the ASYMPTOMATIC (without symptoms of disease) or SYMPTOMATIC persons to decide for themselves whether they wish to undergo a preventative screening test or not.
    Birth control IS being denied to those who decline Paps.

    To the person who said: “where are you choosing your doctors? The yellow pages?” — In Canada, you are given whatever doctor is available. Period.
    That’s Universal Health Care for you – watch out Americans, are ya sure you want it? You are treated like the doctor/clinic is doing you a favor by giving you a spot in their practise. You are treated by whoever is on shift – new doctors, residents, interns, especially in cities where the hospital is a Teaching Hospital! Even if you make your appt weeks in advance w/ Dr. A, you will walk in and be greeting by Dr. B. This has actually happened SEVERAL times to a women I know. Not once, but over the course of several years she actually saw 3 different ‘residents’ when she had made her appt for her own OB/GYN.
    “Hi, I’m Dr. B, I’m a resident working with Dr. A this semester, and I’ll be doing your Pap today!” “But I booked my appt for Dr. A” “Ya, I know but Dr. A wasn;t available today” “then why did the secretary make my appt for today, when I said it was for Dr. A” ” I don’t know, but…I’m here now and… uh, the notes here say that you need a prescription for renewing your contraceptives? Ok, let’s set you up for your Pap.”

    Women have now raised concerns about the risk od being infected by instruments used in procedure; improperly disinfected speculums, etc. Hep C can live on surfaces for 7 days. HPV has even been found under young boys’ fingernails!
    http://www.seattlepi.com/local/325845_hpv01.html

    The more tests in a lifetime, the more the risk is raised.
    (They tell women about multiple partners but not about multiple Paps).
    A speculum is still an instrument with sharp edges and women come in different shapes; it takes alot of experience to use such an instrument – and injury to the women can occur.
    WHY do doctors claim that “spotting” and “cramping” is NORMAL after a Pap sometimes? NO.
    The body knows best and is trying to protect itself against harm = trauma incurred during the procedure!

    The bottom line = any foreign object inserted into the vagina — and any object SCRAPING an internal organ (cervix) — creates the possibility of infection and/or injury.

    Where are the LAWYERS please? American, Canadian, Australian, European lawyers specializing in Human Rights and Medical Practises.

    Women are not sick when they request contraceptives.
    They are consumers within the health system industry.

    Until the pill is available w/o a prescription, this abuse of rights will continue.

    Lobby, raise your voice, people in the media, legal representatives… please! It’s 2009 for crying out loud!

  • Diora

    . Doctors have made cancer screening for women compulsory -cancer screening can never be compulsory!
    This is true for all screening. It should be a choice – for both men and women. Men are routinely tested for PSA without their consent or even knowledge either – a man comes for a physical, the doctor orders a blood test and marks some things on a pink paper and most men don’t even bother to ask which tests are ordered. How many people actually ask their doctor ordering a blood or a urine test – what am I being tested for? Talking about urine tests – these aren’t even recommended, but most physicals have them. EKG as well.

    Nope, there may not be time during the visit to discuss all the tests, but why not have a pamphlets in the office – as suggested in this blog entry – to describe all tests and mention what is recommended and why and with apropriate statistics? This way people who aren’t interested wouldn’t need to read them, but people who are – would. They can ask their doctor then if they have a question or tell right away that they made their decision and don’t want a specific test.

    I am not even talking about the practice of not giving BCP to women who refuse a pap smear…. This should be illegal. I’ve never had a chance to be in this situation personally: I didn’t bother going to a doctor until I was 33 – as Susanne above I was a virgin until I was 32 and didn’t see much reason to go to a doctor. Thereafter, I wanted to get pregnant, but my then-boyfriend was real careful not to let this happen. Plus, at the time I was a “good girl” who did everything my doctor said, so I’d never questioned pap smears. After that my periods started getting more and more irregular — interestingly my ObGyn couln’t care less about that in spite of my repeated complaints of 2- than 3- than 4- months delays. I guess screening asymptomatic women is considered a whole lot more important by ObGyns than ordering a 100% accurate blood test (at least if done twice over 4 weeks) to check hormones of a woman who is anxious and distressed because her until-then-regular periods started to get more and more irregular… Or even ask her about other symptoms: many young women experience menopausal symptoms (which are much much more severe in young women) without even understanding why they feel this way. POF support group as well as earlymenopause.com is fulled of women with history of multiple doctors visits and repeated complains with the reply of how it was all in their head. So anyway, I didn’t have to worry about BCP, though in hindsight, at least being on BCP would’ve been good for my bones as well as my symptoms. Oh, and the sensitivity of some doctors is amazing. One 20-something woman with POF was actually told “now you don’t need to worry about getting pregnant”.

    Back on subject – it is not just doctors that pressure people into screening regardless of their wishes. It’s our whole society. Some employers for example offer some “healthy living” rebates for some things that include screening. A year or two ago, German government wanted to charge cancer patients more if they hand’t been screened. Our media talks about how every woman should be screened for this or that and how it is irresponsible not to be screened. When senator Edwards’ wife was diagnosed with breast cancer and it came to light that she hadn’t had mammograms for a certain number of years, there were a number of articles and letters to the editor from women chastising her. A radiologist – Dr Leonard Berlin – actually wrote an article in the paper about it. It was called something like “Respect choice not to have mammograms” or something like it in which he actually tried to explain benefits and risks and the fact that nobody can know if mammogram would’ve or wouldn’t have helped in a particular case. I doubt any of those women scoling a woman with breast cancer for not having had mammograms got a message.

  • Louise, Melbourne

    Hi, I’m an Australian lawyer and all of this concerns me very much. I know women were refused the Pill without a pap smear many years ago. As far as I’m aware, that is no longer the case. I’ll certainly be following that up though. It is totally unacceptable to make a cancer screening test a pre-requisite for contraception. It’s certainly unethical and a breach of professional standards. (and perhaps even more)
    I’ve never relied on doctors for contraception. It was clear to me as a young woman, that this reliance can mean doctors take advantage. A woman seeing a Dr for the Pill should not need to subject herself to intimate probing because the individual doctor thinks it’s a good idea. Given I can’t find any medical associations that say gyn exams, breast checks or pap smears are necessary for the safe use of the Pill….it therefore means these doctors are creating their own rules. Many women find gyn exams traumatic and they should only be done when absolutely necessary. I see a doctor “doing as he/she pleases” simply because a healthy woman wants contraception, as totally unacceptable. At the very least that woman should be told the Dr is operating outside of recommendations and asked for her permission for these “extras”. If these extras had any clinical value, they’d be recommendations. I think every woman should challenge a Dr doing more than a blood pressure check and reviewing medical history.

    It does concern me that Australian women are over-screened and we have huge colposcopy and biopsy rates. Most women are totally unaware of the rarity of this cancer and the risks of testing.
    The UK screens from 25, Finland & the Netherlands and other countries screen from 30. If you screen young women, It is WELL KNOWN that you end up sending large numbers of women for biopsies, not because they have cancer or are likely to get cancer, but because the smear records natural changes that occur in young bodies as abnormal. We know actual cancer in a woman under 30 is exceedingly rare. In this country, screening often starts as young as 18, if you’re sexually active at that age.
    We also screen 2 yearly. It is now crystal clear that there are only marginal benefits screening women every 2 years and that this program produces very high rates of false positives.
    I have send several letters to various govt officials over the years and of course, nothing has changed. Our program needs immediate revision and if they can’t agree, leave it to women to make their own choices. As it is, only 60% of women follow the Australian program.
    It concerns me even more that women are unaware of any negatives attached to this cancer test. Over the years, I think I’ve seen one article. Doctors have been very successful at keeping this out of the papers.
    Women are entitled to know all the facts – concealment is unacceptable.
    Our doctors also receive incentive payments under legislation. This clearly encourages doctors to strongly recommend screening. I think informed consent is a casualty of the payments system.
    I read an article recently that was linked to Dr Sherman’s blog. It was written by an American pathologist and the figures were surprising.
    99.35% of women will not benefit at all from smears and may even be disadvantaged (99% normal smears and 0.35% false negatives) add to this – 95% of your women will have a colposcopy in their lifetime and 77% of Australian women.
    On those figures, you can clearly see that a low risk woman may feel uncomfortable agreeing to a test that’s very unlikely to benefit her, but very likely to lead to unnecessary and potentially harmful treatment. A high risk woman may feel differently or may prefer to live with the very small risk. Surely, that is every womans right.
    I think we need that sort of information presented to us before we agree to screening. The tests presented to women are also expressed in terms that are misleading and deceptive. There has been a “75% reduction in the death rate”, but they don’t add this cancer is rare anyway…
    You need that next piece of information to make an informed decision.
    We need a major change in the “marketing” of these programs. Women should be entitled to review their risk position and make a decision for themselves. In that way they protect themselves from harmful over-treatment.

    It is totally unaccceptable to “fashion” statistics and facts that mislead women as to the risk of this cancer, the reliability and benefits of the test and the risks of the test and risks that can flow from the test. Any woman with a false positive is likely to suffer high anxiety until she is given the all clear. At the moment, a high number of women are put through this anxiety and over-treated. With some knowledge, we could better protect ourselves from worry and harm.
    I make the same criticism of mammograms. No one can deny mammograms are a controversial topic and women should be included in that debate – it’s their health on the line.
    I saw an interesting statement recently that made sense to me. The medicalization of womens bodies has led to lack of bodily autonomy and an abuse of human rights. I agree with that statement. It was posted by an anonymous woman, but I share her concerns.
    I do NOT agree with routine gyn exams – they are of unproven benefit and can take you down excessive diagnostic paths. Fortunately, no doctor has ever suggested I have one.
    I think this discussion is 25 years too late, but I’m pleased and relieved this extremely important matter has now been raised…
    Remember….Cancer screening is not a law and no doctor can ever demand you participate in any of these programs.
    Dr Sherman, thank you for starting this discussion.
    (My figures have been taken from an article by Richard DeMay, “Should we abandon pap smear testing” published in the American Journal of Clinical Pathology in 2000. You’ll find it on-line or using the link from Dr Sherman’s excellent and informative site.

  • Bella

    When I was pregnant, I got a routine pap screening that came back mildly abnormal (ASCUS). My nurse-midwife explained that the chances that I had a “pre-cancerous” condition were quite low. And in the slim chance anything was wrong, the chances were overwhelming that my cervix would heal itself after my baby was born. And yet, her protocols stipulated that I needed an immediate colposcopy.

    I was beside myself. The information she gave me did not seem to fit the prescription. A colposcopy is an incredibly invasive, expensive procedure. And I was pregnant, so I did not particularly want anyone poking or prodding at my cervix.

    I read everything I could in the scientific literature and decided I did not want a colposcopy based on such a small risk of anything being wrong.

    You should have seen the nurse midwife’s face when I refused the test. She scowled at me and made me feel like a complete idiot. I in no way felt like I had a right to informed consent. I immediately found a new midwife after this incident.

    This experience made me really question the value of pap tests. I know far too many women who’ve gone through cryotherapy, cone biopsies, etc. in their early twenties. Those procedures have very real risks – some physical, some emotional. Moreover, most of these interventions were unnecessary by current guidelines.

    I’m tired of hearing that pap tests have reduced the incidence of cervical cancer in the last 50 years. It is a correlation. There’s never been a controlled randomized test on the pap’s efficacy. In the same years cervical cancer plummeted, the number of hysterectomies sky-rocketed, condom use went up (because of HIV), and sanitation got better. It’s time for a real study on whether the pap is the reason for cervical cancer’s decline. And meanwhile, all women deserve actual informed consent on these issues.

  • Aleisha

    How do we avoid excessive testing?
    Our doctors won’t refill our birth control unless we agree to their terms. Those terms are annual pelvic and breast exam, pap smear and mammogram (the last one when you turn 40) Some require rectal exams as well. They can require whatever they like, they have the authority and power.
    After the pap guidelines were revised down for women over 30, my doctor said annual paps were still required if I wanted the Pills. My friends had the same problem.
    There is no point revising down guidelines if women have no choice anyway.
    I suppose women who don’t rely on doctors for birth control can consider the new guidelines.
    I’ve seen a few gyn’s saying this last week they won’t be changing their practices. The excess will continue because it suits doctors to over-test us.
    I don’t want any of it and hope to go off BC shortly and I’ll be rid of the whole upsetting business. I’ve always known these exams were over-the-top and “required” not for my health but so doctors can maintain control over their income generating patients.
    I feel like I lost control of my body, privacy, dignity and rights, the day I needed birth control.
    HOPE is not available at every PP or it wasn’t when I last checked. I might call them again tomorrow and double check.

  • Diora

    I am not a litigious person, and I don’t need BCP anyway, but I am wondering if this practice of requiring exams before BCP is even legal. Could a woman successfully challenge the practice in court? Report a doctor for violating the right of a patient to refuse medical treatment? Take a doctor to a criminal court for blackmail – because this is really what it is. There is no real medical reason for making screening a requirement for a BCP.

  • Margot

    Isn’t it appropriate that PP call their Pills with no exams or test, HOPE? It all gives us hope…(it actually means Hormonal BC with Optional Pelvic Exam)
    Isn’t it disgusting that women have to beg to get what other women take for granted?
    Access to reliable birth control without their rights being violated…because it’s your rights that are violated before your body.
    We’re made to feel grateful to have the same rights as other women.
    PP still pressure you; you still have to be very firm.
    I don’t make up excuses any more for them. I don’t want the test or exam, my body, my right, my informed decision.
    I can cope with anything doctors can dish out – and I’ve had the lot over the years. They would not allow someone to violate their rights, just remind them of that fact.

  • Lynette

    It’s incredible that in all these years a woman hasn’t challenged this in Court or sued after being injured by an unnecessary biopsy (although keeping women ignorant means she probably wouldn’t realize it was unnecessary) AND not one ethical doctor felt compelled to speak out.
    We have lots of powerful women in this country and whether they think pap smears are worthwhile or not is beside the point, I’m sure most fair and reasonable people would agree cancer screening requires informed consent and that applies to women as well as men.
    Could anyone really argue informed consent only applies to men? Of course not…
    I think people would consider it outrageous if men were “required” to have a rectal exam when they went to the Dr in need of any medication at all…antibiotics, anti-inflammatories. Can you imagine a doctor saying, “we hold other medications until men have their rectal exams for prostate screening?”
    That is exactly what happens to women.
    I guess the difference is that withholding antibiotics could have immediate consequences and the Dr ends up in Court. Yet when a woman is refused birth control, she may well fall pregnant…that doesn’t seem to matter, yet pregnancy and childbirth carries significant risk to your health. A lot more than the tiny risk of cervical cancer.

    I think it’s shameful that this has been allowed to continue all these years.
    All men AND women have a right to refuse cancer screening. This goes way beyond an issue of informed consent; there is no consent at all when women are coerced into testing to access birth control.
    The illegal boycott that has been created by doctors (their own colleges say these exams and test are not required for the safe use of the Pill) must be broken down…

  • Meg

    I refused those terms and my husband and I have used condoms our entire marriage. We apparently have lots of birth control options these days…not really, only if you agree to a doctor’s demands and they can be whatever he or she feels like dictating…it doesn’t have to have any relevance or importance and may even hurt you.
    I won’t have preventative health exams and screening of debatable value demanded of me.
    It has been inconvenient…but my husband and I think my rights are more important and the cost of the Pills is just too high.

  • Ingrid

    Reading some of the medical journals linked from Dr Sherman’s blog, I discovered the following facts.
    The risk of this cancer in an unscreened population is about 1.58%.
    The number of women who benefit from smears – about 0.65%. A low risk woman has a near zero chance of getting this cancer.
    99.35% of women won’t benefit from smears and 0.65% will benefit from smears.
    Annual testing means 95% of women will have a colposcopy and biopsy, with only a very small number having any sign of malignancy.
    My risk with 2 yearly screening -77%
    Three yearly – 65%
    Five yearly – 55%
    Are you kidding me?
    What is all this testing really about?
    Those odds are awful – this testing is MUCH more likely to lead to a useless biopsy than a diagnosis of cancer.
    If this cancer were common, maybe a unreliable test might be worth the gamble, but an unreliable test and an uncommon cancer – bad news. Add to that over-screening which increases the risks.
    A gamble like this should definitely be a woman’s choice. It should always be a woman’s choice regardless of odds.
    Ladies, we have ALL been seriously misled. I urge all of you to read some of these articles published in medical journals.
    How dare they keep these facts from us and more than that, TOTALLY misrepresent the situation!

    I’ve been told this cancer is common – not true, it’s rare and always was…
    This testing is vital for all woman – Hardly! It helps a tiny % and puts almost all women through the trauma of biopsies.
    All women have the same risk if they’ve ever had sex – Again, manipulating the truth, even if you have every risk factor, the chance is still very small. A low risk woman is almost no risk for this cancer.
    This test is accurate – a total LIE
    Colposcopies are minor procedures – I know that is a matter of opinion! Many women find biopsies painful, humiliating…really traumatic. Some women have health problems after procedures like LEEP & cone biopsy.
    Young women are at greatest risk – total lie. They has almost no risk and produce terrifyingly high numbers of false positives. They are at great risk from testing, not cancer.
    Everything I was told by Dr’s and I’ve read in the papers and in magazines is a manipulation of the truth or a lie.

    Okay, so we have the medical profession DELIBERATELY misleading us and that has lead directly to harm for thousands of women – probably millions.
    This is SHOCKING – what makes these people think they have the right to treat women this way?
    An immediate enquiry needs to take place, women need the truth – not lies, misleading statements and statistics manipulated to exaggerate a benefit or risk.
    The pressure, tactics and coercion must stop.
    It makes you wonder about the motivation of doctors who lie and deceive – almost all of them – I suppose we represent easy money and our good health is of no consequence to them.
    Even if they are motivated by the 0.65% who benefit from smears, they have no right gambling with my good health or at the very least, the decision to take such a huge gamble with testing needs to be fully explained to me and it must be my decision. A brochure on colposcopy and biopsies should be given to every woman who has testing…it’s inevitable she’ll face it sooner or later. That’s why women think they’re dying when they get an abnormal result and doctors are not too concerned – they KNOW about these risks, we don’t…
    It’s unfair to allow a woman to take those risks in complete ignorance and then face it all for the first time when she gets her false positive.
    I’m afraid I’ll look at doctors a little differently from now on, actually a lot differently.

  • Ingrid

    I forgot one important fact…
    All the doctors telling us that annual smears are important. Be careful…
    The more often you screen, the more likely you’ll face biopsies or LEEP. There is very little benefit having annual smears from 21 over 5 yearly smears from 30….BUT the risks of testing go through the roof with early, annual and 2 yearly testing.
    Once again, these doctors are not telling you the whole truth.

  • Laina

    I agree with all of the commenters in that refusing to allow women to make their own choices regarding pap smears is unjust and unacceptable, I can’t help but cringe at how badly many of the commenters above are speaking about the medical profession. While the medical community was wrong in withholding options, undoubtedly, I think there is at least some justification in pushing for high amounts of testing, even with all of the false positives.

    These tests are sensitive – they pick up even the tiniest abnormality. However, they are so sensitive that they pick up other abnormalities – maybe you had an infection recently, or vigorous sexual activity may have caused some temporary traumatic cell changes. The benefit to having such a sensitive test is that you don’t miss anything! Sure, you might get some false positives that, upon further testing, end up being confirmed negatives, but this way, so few women with truly malignant cells “fall through the cracks.” Many would argue that the high number of false positives or false abnormals is a small price to pay for the ability to identify every single cervix that is on its way to developing cancer and not miss any.

    This, of course, is not a justification for the unreasonable force used to coerce women to get pap smears. It is an explanation for why tests that pick up so many false positives are in use at all. It is generally accepted that it’s more permissible to cause a bit of anxiety over a false positive (that you confirm to be false through further testing) than it is to give a test that gives women with pre-cancerous progressions a false sense of security. I, personally, would prefer to be a little on edge until a follow-up pap smear, if it means giving another woman the chance to stop the progression to cervical cancer.

  • Ray

    Informed consent.
    Here is a summary of the law as it relates to informed consent.
    Would a woman have agreed to the test if all the facts had been fully disclosed to her? The points made by Ingrid are pertinent here…
    Was it the woman’s decision to have testing of her own free will? The “requirement” of smears and other invasive exams for the birth control pill would be relevant here…on my reading, there does not appear to be any medical basis for making pap smears, pelvic or breast exams, a requirement for the Pill. The medical literature talks about the risk of clots, high blood pressure and stroke and the need for regular blood pressure tests and the taking of a medical history to establish the suitability of the patient.

    I think there is a sound case to be made having regard to the current position. It seems only a few very well informed women could actually give informed consent for screening at the moment.
    Why? It seems no or inadequate and/or misleading information is provided to women and informed consent cannot be provided in those circumstances.
    Consent itself is negated by coercion. That could certainly be argued for women “required” to have the test.
    It could not be argued, it was of her “own free will”.

    I would go further and say any woman with a negative outcome following a procedure for a false positive or when a false negative result delays a diagnosis, would have an actionable case; as in neither case did the women provide informed consent for the test in the first place.
    You cannot provide informed consent unless you have all relevant information (and certainly the absolute risk of the cancer, the high number of incorrect test results and the likelihood and risks of over-treatment and false negatives are relevant here) AND, it must be your decision to screen “of your own free will”.
    Hope this helps…
    http://www2.sunysuffolk.edu/pecorip/SCCCWEB/ETEXTS/MEDICAL_ETHICS_TEXT/Chapter_6_Patient_Rights/Readings_Origins_of_Informed_Consent.htm

  • PH

    English doctors have been reminded to get informed consent before doing cervical screening.
    In practice, I doubt it happens.
    Most women still report extreme pressure to screen.
    I don’t think that will change until they get rid of performance bonuses for screening 80% of your female patients. That encourages pressure, your informed decision not to screen may mean the doctor stands to lose thousands of pounds.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115917/

  • Joanne

    Laina,
    I think what you’re seeing and hearing is a reflection of women feeling deeply resentful of manipulation and disrespect. I think cancer screening has put a lot of distance between women and doctors and changed the relationship to schoolteacher and child or police officer and accused.
    I don’t understand why cancer screening for women has been approached in this way. You don’t see this sort of thinking and disrespect when men are involved…that’s a fact.
    Men are offered screening, women are demanded…
    I totally agree with that comment.
    I have felt pursued, insulted, over-whelmed, embarrassed and anxious as a result of the attitude of our doctors.
    Everything you read and the way this screening has always been “marketed” implies women have no choice.
    My husband has options, his doctor is respectful, he has been given an information sheet on PSA testing that covers risk. It seems an honest summary of the test.
    The reverse is the case for women. The information I’ve received has been inadequate and I agree with the other women, very misleading. All of it implies you must have screening, and that the test is simple, risk-free, life-saving and for a common cancer. I never understood it was life-saving for a very small number of women. I do know many women who’ve received treatment and would never describe this test as risk-free.
    I have sometimes felt like a fugitive on the run because of the pressure to screen.
    I know many women hide and avoid feeling anxious and resentful.
    I do feel resentful as well.
    It has changed the way I view doctors.
    Cancer screening should be respectfully offered to women, as it is to men. Prostate cancer is very common, cervical cancer has always been uncommon. The only motivation for the change of attitude is lack of respect for women and financial rewards. I resent being a target, and not a patient afforded respect and with rights.
    The refusal to provide the Pill without screening is yet another example of the very attitude I’m talking about…
    I wouldn’t be surprised to hear women who refused screening were to be named and shamed in the newspaper. It seems they are untouchable in their treatment of women.
    This is the first opportunity I’ve had to air my feelings.
    Thank you, Dr Sherman.

  • http://www.malpracticelawfirm.net jimeyers

    For a comprehensive review of literature dispelling the myth that there is a big difference between high risk and low risk patients and screening for cervical cancer please read NUNS, VIRGINS, AND SPINSTERS’. RIGONI-STERN AND CERVICAL CANCER REVISITED, MALCOLM GRIFFITHS http://bit.ly/61yr11

  • Joanne

    I’m afraid I think articles like that are just used to scare all women into testing. Not all nuns are virgins anyway, some enter orders as older women. Who would suggest a spinster is always virginal? I hate that word anyway – it reminds me of witch. I don’t agree that women need to find a category that “excuses” them from screening. We’re entitled to the information and should be free to make our own decisions. All my husband said was, “I don’t want the test”…he didn’t need to find a category or list his reasons.

    A virgin may not have had actual intercourse, but can become infected with HPV if she’s been intimate with an infected male.
    These broad theories are misleading anyway…and divert attention away from the real issue.
    The fact is this cancer was always uncommon and always represented a small risk to women and really no risk to low risk women. The fact we spend so much time and money testing and discussing such an uncommon cancer is a mystery to me.
    Let’s move on and obsess about thyroid and renal cancer for a change.
    I firmly believe women should have a real choice about this testing with honest information.
    The test is inaccurate,
    the cancer has always been uncommon,
    and the risk of a false positive and very unpleasant, risky and painful treatment is very high.
    That is the way it should be presented.
    It doesn’t matter whether a woman is a virgin or not, we all have a right to honest information, a right to choose and to be treated in a respectful way.
    I know I’m low risk for cervical cancer. I’d prefer to talk about heart disease, which takes a vast number of lives or lung cancer or almost any other sort of cancer; they all take more women than cervical cancer.
    I know women not yet sexually active are pressured to screen in the States from 21. I hope these women are informed of the high risks. I know young women (sexually active or not) are excluded from the UK program. I read that one in four smears in the under 25′s will be abnormal. These results are caused by natural changes in their bodies and they don’t need biopsies. It’s unethical to screen having regard to the very high risks v very low benefits. This cancer is even rarer in their age group.
    There are risk factors for this cancer and if I could put a tick in every box, perhaps I’d feel screening was a good idea and the risks were worth it. Perhaps, I’d use a time frame that reduced the risk of false positives.
    However, I’m not high risk and prefer to worry about more immediate and likely risks to my health.
    Diverting so much money and time into cervical cancer doesn’t make any sense at all.

  • HB-G

    I have no time for the ObGyn website.
    It is basically a group of doctors with a serious vested financial interest, lecturing, speaking down to, misleading and frightening women.
    Some of the paternalistic “advice” makes me sick to my stomach.
    Much of the advice is plain wrong. These people are frantic to keep the fear ever present and the facts well hidden.

  • Anon

    We have paid lip service to informed consent and cervical screening for many years now. We all know in practice it doesn’t apply at all. The majority of doctors in the States have even made smears compulsory for contraception.
    Until the General Medical Council takes action to police the guidelines for informed conent with cervical screening, nothing will change.
    Changes need to be made to the payments system. Instead of based on a percentage of screened women, it could apply to the number of women who are offered screening, given an unbiased brochure and sign up or sign off the program.
    There was an piece in the BMJ in 1999 by John Nottingham, Consultant Histopathologist entitled, “Women must be given fully informed information about cervical screening”. The General Medical Council had at that time expressed a similar view. Nothing changed because the root of the problem was never addressed. There is entrenched disrespect for a woman’s right to make an informed decision and the payments system encourages that attitude. No point making grand gestures at the top without ensuring they are taken up at the bottom.
    BMJ 1999;318:1555 (5 June)

  • John

    This Dr has touched a sore point. One that has been successfully hidden for as long as I can remember.
    Doctors do treat women differently. Women get an order and men have a choice.
    It seems my wife’s concerns about having treatment are not a good enough reason for avoiding the test. No reason is good enough. My wife is alarmed that so many of her friends and family have ended up in treatment rooms. She doesn’t believe (and neither do I) that all of these women had cancer or would have ended up with cancer. We know most of them had normal biopsies. These treatments are difficult for women…painful, intimate exposure, high anxiety, fear and then aftercare issues like bleeding, cramps and soreness. It seems there are other risks as well.
    I cannot dismiss the huge numbers of women being put through treatment rooms as trivial and of no importance. Does a very small risk of cancer justify putting so many women through treatment? Surely only the individual woman could and should make that value judgment.
    Yet all women are supposed to be accepting of the very high risk of having these sorts of treatments to cover what seems like the smallest of risks from this cancer. Assuming a woman even knows about these high risks.
    Surely, women are entitled to say they’d prefer to carry a very small risk than take a test that will send almost all or the majority of women into a treatment room. I see here that 5 yearly screening still sends 55% of women for treatment. Annual screening sends almost every woman.
    The question that keeps coming into my head:
    How was this test even approved? Why has cervical screening never been “offered” to women as prostate screening has been offered to men? I’ve seen numerous articles on PSA testing and DRE, the up and the down side. No doctor has ever pressured me to have either test. Prostate cancer is a major killer of men. Why is cancer screening for women a law that must be blindly followed…even when the risks are high and the benefits are lacking for most women?
    It may be time to remind doctors of their place. They should not be allowed to order our women into screening.
    Prostate screening is my choice and cervical screening is my wife’s choice. That’s the way it “should” be…

  • Margaret

    If you look at government websites for their screening programs, you’ll see all the impressive statistics and they usually have a blurb to GP’s on how to encourage women to screen and mention opportunistic screening. They mention the payments made to doctors for reaching a target and bonuses for screening unscreened and under-screened women.
    I could not find ONE word on informed consent nor on the high risk of false positives and over-treatment.
    It seems our governments have no respect for informed consent and don’t feel a need to include risk information on their website. It seems maximizing coverage is all important.
    Our doctors have a conflict of interest and are paid to screen, not provide us with risk/benefit information, obtain our informed consent and respect our right to choose.
    The reasons women don’t screen are given as: embarassment, fear of pain, ignorance and other things, but they don’t mention the low risk of the cancer, low personal risk, fear of over-treatment or making an informed decision not to screen for whatever reason.
    It seems the problem starts at the very top in many countries. The programs were designed with no regard or respect for a woman’s right to be fully informed and to choose whether or not she wishes to participate.
    I doubt direct lobbying to the government will help. Media attention and criticism is the only thing that might force change. It’s worrying that most women are unaware their doctor has a conflict of interest and no idea of the risks of testing. Media attention would hopefully get the message out to women.
    In the end, it doesn’t matter what percentage of women screen, as long as they’re all making an informed decision to screen or not to screen. We’re a long way from that position at the moment.
    The emphasis needs to move from coverage to the rights of all women to be provided with the information that allows them to make an informed decision. Doctors should not be rewarded for reaching targets. We need to ensure compliance with the legal and ethical rules of informed consent.

  • Sunny

    Doctors and their offices seem to be on remote control regarding pap smears and do them even when patients tell them that they don’t want or need the test. I am angry because it not exposes me to the possibility of a lot of unnecessary testing and procedures but because I pay cash for the specimen collection and a pathology report that I don’t want or need.

    Last year I told my OB/GYN that I didn’t think I needed a pap smear since I am at extremely low risk and have never had a result that generated concern. It was done any way.

    Two years ago I told a different OB/GYN that I didn’t want or need a pap smear. That request was put in my record but the office was so automated that the specimen bottle with no cells was sent to the lab and again I was charged for the pathology report. I fought that and eventually won but only after the office staff called to say that they had gotten the lab to forgive my charges and made me feel like they were doing me a favor.

  • Anonymous

    The sheer # of comments posted (and which continue to increase) after this article appeared shows the impact of this issue on women. If you compare the # of comments posted after other subject blog articles – it’s dramatic.

    My comment: I know someone who went for a Pap (ONLY b/c she had to to get her birth control pill, something she had to do each year or every 2 yrs for over a decade at that point) and the male MD (it was always done by an MD – not an OB/GYN – which she had requested but no one sent her b/c you have to have a ‘need’ for a specialist in Canada, so MDs do Paps for the most part) made the big mistake of telling her that her Bartholin’s Gland (which was slightly more prominent than the other times I guess) was a wart! (She later found out that anything can clog the gland and sometimes it just appears a little bit bigger – otherwise it always goes unnoticed!). ANyway, he coerced her into getting liquid nitrogen treatments right there during the Pap appt (treatment on this supposed “wart”) and then she went home, crying, having to explain to her new BF (new BF of 3 months that she apparently had a wart) and then continue with liquid nitrogen zapping 1x/wk for 6 wks — until she couldn’t take the pain anymore (he was essentially burning off the skin on top of the most important lubrification gland in her vagina) and he finally agreed for her to see a “specialist” (read= colposcopy). When this appt finally came (it took 2 months waiting list) she had ‘somewhat’ healed the burnt skin (but was still experiencing dryness and pain upon intercourse – something she’d never suffered from before) and the specialist pointed out that it wasn’t a wart at all, but the “Bartholin’s gland” — a perfectly normal part of the female anatomy. Apparently the MD had never heard of it. Interestingly enough, typical anatomical diagrams of the female reproductive system never show it – yet it is a very important gland to know about! There are shows on t.v. with “sex specialists” who have never mentioned it. Do they know about its’ existence? (have you seen Dr. Berman on Oprah ever point it out on the diagrams that she brings onto the show?). Imagine your mouth with damaged (burnt!) salivary glands?! …

    So, that’s another reason why PAPS should not be done unless and until any woman WANTS it. NOT as a condition to receive birth control pills renewal presciption year after year after year. My friend did not have a choice and it led to fear, pain, dysfuntion (still to this day she experiences the ill-effects of having a healthy normal gland BURNT by 6 weeks of liquid nitrogen treatments that were NOT even warranted). Of course, she does not have the means to hire a lawyer to sue and the pro bono organisations say that it will be ‘too hard’ to prove any wrongdoing. But we all know that this would not have happened if she hadn’t HAD to have a Pap to renew her birth control at that moment.
    The number of comments in this column keep growing for a reason = this forced testing has got to stop!

  • Ruth

    Doctors are breaking ethical standards and probably the law when they “require” smears (and most also require pelvic, rectal and breast exams) for birth control or by using high pressure to screen. All doctors must have a conflict of interest with screening. Money is always involved whether they get paid to reach targets or not. Our rights are being kicked aside and high risks are taken with our health every day this continues.
    I don’t believe these “rules” would hold up in a court or before a professional board. Every woman has a responsibility here…If a doctor forces you and uses excessive pressure…stand up for yourself or/and report them or even speak to a legal service.
    If we keep co-operating with them, nothing will ever change. They have been getting away with this for so long, it will take firm action to force doctors to see women as patients with rights. Our bodies do NOT belong to them. If I don’t want a vaginal, pelvic or breast exam, that’s MY choice. If I wish to avoid the certainty of procedures with this testing and wish to take the very small risk, that is MY right.
    Why don’t they feel concerned about the death rate from testicular cancer or prostate cancer and force all men to have exams? Because they know they wouldn’t get away with it for 5 minutes. It would be an unacceptable and hazardous way TO TREAT MEN.
    Doctors are not our guardians…we’re adults and it’s time we were treated like adults.
    Any woman who has had treatment for a false positive should also speak to someone about her rights. When the risk of that happening is sky high and we’re not given a real choice or even told of the risk, that is wrong…wrong at every level – legally, morally & ethically.
    No doctor has ever asked me whether I wanted the test or mentioned risk. When almost all women have procedures, how dare they not even mention that massive risk to me! In other countries, the figures are still very high but not an almost certainty, as it is here.
    Can you imagine any other test that sent 95% or 77% or even 55% of patients for cryotherapy or biopsies, that fact not even worthy of mentioning and more than that…allowing the test to be forced onto the patient?
    Now factor in the very low risk of this cancer.

    I don’t think doctor’s have the right to write-off these procedures as minor or trivial when it’s MY body.
    The risk of this cancer can never justify the insanity that prevails and the harm being done. The motives here are very clear – money, power, control and politics.
    This “regime” helps a tiny number of women at a heavy cost to the health and rights of more than 99% of women and we’re not even asked whether we accept that risk.
    How could that seem right or fair to any reasonable person?

  • Anonymous

    You should all read this article…
    It seems doctors strongly recommending routine pelvic and breast exams is on shaky clinical ground. Far from being vitally important to your health, they may harm you.
    I think taking advantage of women and their bodies goes way beyond pap smears. You might want to question the value of these annual explorations of your genitals, pelvis and breasts. You might be surprised to hear they can lead to unnecessary/harmful diagnostic tests and even surgery and are of dubious/low/poor clinical value.
    http://humupd.oxfordjournals.org
    /cgi/reprint/10/5/449.pdf

  • Sally T

    Is screening worth the damage done to healthy women to save a tiny number?
    Just how effective is screening anyway? The article below is brief and provides some interesting stats and facts.
    It mentions cervical cancer rates were falling before screening started.
    This test may be worth it for women prepared to accept the risk of over-detection and treatment to reduce the already low risk of this cancer. They are the only women who should be tested.
    Other women should be free to opt out of this testing.
    http://www.bmj.com/cgi/content/full/315/7113/953

  • Mrs. C

    After reading (with great interest) all of these comments (someone forwarded this link to me), I decided to call the governing body for physicians in my area.
    Unfortunately they are “self-regulated”. Quote:
    “… Doctors in _(physical location)_ have been granted a degree of authority for self regulation under _(location)_ law…”
    The answer I received from a public relations person at this office was murky. Basically it leaves it all up to the doctor’s discretion (his/her choice based on his/her experience and medical training).
    I feel it is time to hire a lawyer… Even though I won’t be needing contraceptives for many more years, I’d like to make a difference for others after my lifetime is over.
    In the last couple of days, I’ve called law firms and so far no one wants to take it on. They say it is not something that they feel would be a ‘successful’ outcome. It appears the medical profession has it all locked up. Each office visit will all come down to “medical opinion” — which all doctors have continued to control. This is turning into a Seinfeld episode. If only it was actually funny.

  • Anonymous

    This is the first I’ve ever heard that the actual incidence of cervical cancer is so low.
    I was forced into having Pap smears, pelvics etc my entire reproductive life. Or should I say non-reproductive, because I had to have the tests/exams to get my yearly Pill prescription renewed. At first they would only renew it every six months so that meant the same ordeal ever six months. I have always had vaginismus so I was only able to endure these exams with a valium borrowed from a friend.
    After I had been monogamous for eight years I got a positive Pap Smear, which resulted in a painful colposcopy process, followed by laser surgery to remove the dubious areas. (Not painful, just scary.) I was luckier than another woman in my office: she was ordered to have a cone biopsy. After that i had a series of negative Pap smears. I switched directly from the Pill to Hormone replacement, which also required regular, now yearly, pelvics/Paps. I stopped seeing gynos in my mid-fifties when my HRT caused me to have massive bleeding. She couldn’t even get through my cervix to take tissue, so i had to have an ultrasound. Never heard the results so I guess there was no problem–the bleeding stopped a few days after I discontinued the HRT (against Dr’s advice). Now i take no drugs (for anything) except progesterone cream. I am 60ish. Just last week my doctor’s office called and said they were calling all their women patients and telling us that we had a month to come in and have a Pap Smear, (or show proof we had had one recently elsewhere) otherwise our health insurance premiums “might rise.” On further questioning the assistant who called said that the primary care practice itself was being pressured by our health care PPO to make sure the female patients had Pap Smears. Not just show a record of advising Pap Smears, I asked. “No Making sure they have them. ”
    I wanted to ask what health insurance company has the nerve or the right to force one to have an invasive test, but jaded after years of seeing health care in the US decline, I simply said, uh huh. What was the point of telling her that I feel I have had my lifetime quota of Paps and Pelvics. No mas.

  • Diane

    Thank you, Mrs C
    I can’t understand why lawyers would feel that way.
    It’s clear informed consent is a legal concept and must apply to all cancer screening, including cervical.
    There’s no doubt doctors have stepped way over the line.
    All of the medical research is on our side. There’s no clinical need for smears for the Pill, just a BPC. I have no idea how they explain the need for the other things. (pelvic & breast exams) I don’t think these checks are widespread here. I’ve never heard of women needing a pelvic exam for the Pill, but I do know some doctors want to examine your breasts. One of my friends now refuses the breast check after they caused two breast biopsies. Her new doctor doesn’t do breast checks unless you have a lump or some other concern. My doctor is quite relaxed about most things. If you hit a strict doctor, you’d just go elsewhere. The problem is KNOWING what is not required and having the confidence to refuse the exams. Most women just don’t know these things are unnecessary.
    A Court should not be influenced by doctors or insurance companies. What about getting a womens’ health action group to issue proceedings? Seek a declaration from the Courts. In Australia, I’m fairly sure any citizen can apply to the court for a declaration and in this case that would be “pap smears require informed consent and can never be required of women to get birth control or for any other reason”.
    I find this shocking…to think the system has been set up to take away a woman’s rights. I don’t think that would ever happen with prostate cancer screening. Has any man out there been ordered to have DRE or the blood test?
    I hear the blood test often leads to biopsies as well…be careful, guys! The prostate gland is even harder to biopsy and you’re even more likely to end up with injuries.
    I have long wondered why women face all this pressure. Mind you no doctor in my country has ever “forced” me to have one or even exerted real pressure. I’ve been spoken to sternly and talked over the top of, but that’s all. My husband is infertile though so I’ve never needed contraception. My experince may be different to other women for that reason. Now I know more about this subject I won’t sit there like a little girl, a stern lecture will be returned with one.
    I’m very grateful to this Dr and for the people who’ve posted. I’ve just paid about $100 to join the British Medical Journal site and waiting for my membership to be activated. I’ve never been tempted previously to spend one dollar on something like that, it’s usually travel or good food. I think most women are pressured, the degree of pressure probably depends on the country, the doctor and the reason for your visit. The payment and target/bonus system needs to go and we need all of this information out there for women to see…
    I hope more Australian women find this site. I’m sure most have no idea.
    And the last lady…it’s frightening when an insurance company has the power to demand you have a screening test and penalize you if you don’t carry through. That’s really bad, they obviously confidently think they’re above the law. In many countries screening stops at 50 or 60 anyway. It’s unacceptable to pressure you like that…
    Can you complain to the Ombudsman, Insurance Commission or a local politician?

  • Anon

    If you’re raped and the doctor advises you to take AIDS medication “just to be sure” – you may lose your insurance cover or have more exclusions.
    Even if you don’t test positive for AIDS, you might lose your insurance.
    It seems women have a choice….protection from AIDS and no or less insurance or no preventative AIDS treatment and keep your current coverage.
    http://www.huffingtonpost.com/2009/10/21
    /insurance-companies-rape-_n_328708.html

  • Sally T

    I don’t think the link will work for many of you, unfortunately, access to honest info requires a subscription to a medical journal.
    Here is the important message from that article for those who can’t get to it.
    Question: What happens when we screen 250,000 women for cervical cancer? We’re after the 40 or so women among this 250,000 who would die annually from this cancer. It will be fewer than 40 women saved anyway, because not all cancer is picked up by a smear. (false negatives) Not all cancers detected are curable as well, even if found early.
    (I know that one third of the small number of women who get cancer have had a false negative result. The risk of a false negative means these women may be falsely reassured and see a doctor later for symptoms.)

    Back to the article – Of the 250,000 tested, 15,500 newly abnormal smears will be detected. All but a few hundred represent over-detection. Read that last line again!
    The 15,000 with abnormal findings would never have had a problem with this cancer, but that changes with screening. (Many of these women then have further treatment with all the risks.)
    Most of these women will think screening saved their lives.
    This is the famous quote by A Raffle or I think it’s famous anyway!
    “By offering cervical screening to 250,000, we have helped a few, harmed thousands, disappointed many, used 1.5 million pounds each year and kept a few lawyers at work”.

    I think these articles should be published in more accessible places. All the doctors, newspapers and magazines seem to peddle the falsehoods of screening and that just leads to greater ignorance.
    The article is called “Informed participation in screening is essential” by A Raffle (UK) British Medical Journal
    Angela Raffle is an expert in cervical cancer screening (and cancer screening generally)
    I stopped fearing cervical cancer after reading this article and others in the BMJ.
    Knowledge is the critical thing here…you are better able to defend your rights and health when you’re informed.
    Diane, that $100 will be well worth the peace of mind, knowledge and power it will hand to you.

  • Anonymous

    This is an interesting article by Dr. Michael Fitzpatrick about some of the issues concerning screening all healthy women for cervical cancer. It explains the history of the pap test, which I found very interesting.

    http://www.spiked-online.com/index.php/site/article/6384/

  • Elizabeth

    The most compelling statistics for me are those provided by Andrew Rouse, a lecturer in public health at Birmingham University (If I remember correctly)
    If this link doesn’t work, try googling Andrew Rouse and cervical screening. You’ll see from this link an article on Honesty and Screening, worth a read, then scroll down to “Rapid Responses” and you’ll see the contribution made by Mr Rouse. The numbers speak volumes!
    The number of women actually helped by screening…Tiny numbers.
    I REALLY recommend you all look at those figures and then think about all of the over-treatment and the pain, distress and harm it causes to healthy women. Is it reasonable and ethical that women should be pressured into testing, or demanded to have testing, with no honest information, when the chance of benefiting is tiny and the risks very high?
    I don’t think so.
    http://www.bmj.com/cgi/content/full/bmj;320/7238/872

  • Eve

    Now we also have liquid paps, HPV testing and Gardasil for girls and young women. Huge amounts of time, money and effort for a rare cancer and screening seems to cause more trouble than it’s worth. Thousands having treatment to save a few women.
    I’d like to see more air time for heart disease, lung cancer and diabetes, all huge problems in our society. Largely ignored while we spend more time worrying about a rare cancer. We’d save far more lives if we paid more attention to the major health problems in our society. Why are we bothering with a cancer that kills so few women? Why not start with the big ones and work our way down? By the time you get to cervical cancer, near the bottom of the list, there may be a better test that’s non-invasive and reliable sparing the need for all this damaging over-investigation.

  • Anita

    I spent the evening browsing through Papscreen Victoria brochures and reports. I found myself becoming angry and disappointed.
    Many reasons…here are some of them.
    They offer advice to GP’s and list the barriers to screening. I couldn’t find anything on informed consent or the barriers mentioned here that might keep women from screening. Low risk of cervical cancer, abnormal results/over-treatment, past bad experience, informed decision, low personal profile, unreliable test.
    The message on the site is pro-screening with no talk of the negatives. There is some mention of false
    negatives but used to reinforce the fear factor and the need for 2 yearly screening, “we’ll pick it up next time”.
    They mention reaching the unscreened one third of women and various stategies.
    The whole site is a disgrace and makes me cringe.

    The brochure (one of many) does not mention the high risk of false positives (a couple mention the test is not 100% accurate – which is the understatement of the century) and the cancer rates are framed to make it sound a huge and common problem. The barest of info on the test is provided, one doesn’t even mention it’s a vaginal exam.
    These brochures don’t give woman anywhere near accurate information, they have been drafted to serve a purpose – get women into screening. I found one sentence that said the test was not compulsory. (not in a brochure given to women)
    Hardly surprising they needed to point that out after pages of strategies, tactics and recruitment drives. Then they make the point, the registry system will act as a reminder for overdue women, “leaving only unscreened and underscreened women to be targeted by information and recruitment campaigns. The number of these women and their geographical location was identifiable and the task of recruiting them could be researched with accuracy”.
    This is not the Sheriff’s Department and these attitudes need to be changed. Women are human beings, individuals with rights, we are not targets or the accused.

    Table 3.3 is called “Excuses for not screening” and then some info for doctors on how these excuses can be met. No acknowledgement that women have the right to decline the test and don’t need an excuse.
    This is not offering a cancer screening test to women. This is not providing women with the information to make an informed decision to screen. This is a dishonest recruitment drive for a test where the benefits and the risk of cancer is inflated or misrepresented with no risk information. No Australian woman could give informed consent for this test at the moment. The brochures don’t mention our doctors are financially rewarded when they achieve screening targets and “recruit” unscreened and under-screened women.
    We don’t have any doctors like Dr Sherman in this country and I couldn’t find much at all on the risks of testing produced in this country. Probably thanks to Papscreen, another “successful strategy” or “campaign”.
    Dr, any plans for a trip downunder?
    The evaluation report is over 300 pages long,so I didn’t link it, but you’d find it easily enough, it’s linked to their website.
    http://www.papscreen.org.au/downloads/resources/brochures/A_Pap_test_every_two_years_could_save_your_life.pdf

  • Anonymous

    Dr Sherman,

    I want to thank you so much for all you are doing on this issue.

    Just over a year ago, I looked for information on the risks of cervical cancer screening, because I knew so many women who had or were undergoing “treatment”. It also seemed quite strange to me that doctors were so worried about HPV when so many people have the virus and so few end up with cervical cancer.

    I read H. Gilbert Welch’s excellent, “Should I Be Tested For Cancer” and Nortin Hadler’s “The Last Well Person,” which I recommend to everyone, but neither focused much on the pap test.

    I found almost no mention of any possible negatives of pap testing in the popular press. I had to pour through medical journals and try to make sense of various studies. What I found there did not seem to support the seemingly universal support of the pap test amongst doctors, medical experts, and the public.

    I must tell you that I felt incredibly alone in my growing skepticism about this test.

    A few weeks ago, when yet another friend, at only 24, was biopsied and told she needed invasive treatment for dysplasia, I decided to look into this matter again.

    I was so surprised and elated to find your amazing blog and this article on Kevin MD. And it seems like the British press is also reporting more on the dangers of pap screening lately.

    I cannot tell you how important I think your work on this issue is. It will help many, many women. Please continue to get the word out.

    - B.T.

  • Janet

    Dr, I join the others in thanking you.
    It takes a brave person to make a stand when they see unfairness.
    We ARE expected to provide an excuse for not screening. The starting line is…we don’t have the right to say no and a doctor can tear apart any excuse.
    The aim has always been to screen every woman. Most women couldn’t really object because the risks were unknown to them. (and me)
    All of our excuses sounded weak. I had a doctor say to me, you’d risk dying of cancer because you’re EMBARRASSED! It was more than embarrassment…but ridiculing me was probably a “successful tactic” he’d been taught to overcome “resistance”. (using the words from the report)
    I HAVE felt psychologically manipulated by doctors, not generally, but with pap smears.
    I’ve felt pressure from many doctors over the years and couldn’t really defend myself. I always felt bad and anxious leaving the surgery and knew I’d need to look for another doctor and then another. I did feel like a criminal or a wicked and disobedient child.
    I don’t want the test, I don’t believe in cancer screening. I don’t want doctors scraping at my body or burning off pre-cancer cells that are more common than flies. I knew this pre-cancer could not be cancer or our mothers and grandmothers would have told us about all these women who’d died from cervical cancer. Instead my grandmother had never heard of cervical cancer.
    Looking for things that are rare is not something I want in my life. I’m not going to have my kidneys scanned every year either, even though renal cancer is probably more common than cervical cancer.
    I plan to respond to symptoms and consider high risks to my health. Now I have the facts to back up my refusal, I’m sure they’ll be scoffed at as well…because no excuse will satisfy doctors. Their agenda is to screen every woman and our views and good health can be sacrificed as casualties of a successful screening program. If the only way a program can be successful is by using tactics and hiding the truth, perhaps, it might be better to get rid of it altogether. If they can tell the truth and sufficient women want screening, then maybe it’s a successful program.

  • Anon

    Wouldn’t it be easier to tell women the truth at the beginning instead of frog marching them into harmful screening?
    http://www.timesonline.co.uk/tol/life_and_style/
    health/article6898189.ece
    Coming clean when you’re forced too or can’t hide the carnage any longer, is hardly commendable or ethical.
    This newspaper article is called, “women misled into breast surgery after mammograms.”
    The sexes are treated differently. Men have a choice and receive risk info.
    Surprising that women are treated like cattle being shoved down a chute.
    Thank heavens someone cares enough to tell women the truth. Too late for many women, in time for many others.

  • Kathleen

    I got a letter saying an appointment had been made for my first smear test. As I didn’t ask for an appointment or a smear test, I forgot about the letter. I got a call from the surgery wanting to know the reason for my “non-attendance”. When can you come in for the test? I lied and said I was going overseas for a year and would have it there. I wanted to get her off my back so I could think about this test. I got no information either, just a serious warning not to neglect the test or I might get cancer. I have a bad cold and have been coughing badly and feeling miserable. I can’t go to my doctor because I’m supposed to be overseas. The bossiness about this test means women can’t relax at the doctor’s surgery and can’t see the doctor for other things in case this comes up and my friends tell me, it always comes up. I’ll have to find another doctor and say I had the test overseas. I’m not ready to make a decision yet, I don’t know enough about it.
    Does this sound like the offer of a screening test to anyone?

  • EH

    No, it doesn’t..
    It’s also clear your doctor thinks he or she is above informed consent. I know you live in the UK because that sort of manipulation of women is common here with screening. I’d report the surgery to the GMC.
    http://www.gmc-uk.org/concerns/index.asp
    We’re the only country to be really talking about these things and more and more we’re being told this test has risks and doctors must get our informed consent. (This has only been in recent times though.)
    Instead of feeling trapped or chased, report them and claim your rights. You’ll also be contributing to changing this unethical system and helping other women.
    The medical council will take action, they don’t really have a choice any more. The only way to stop this chasing of women is to report the doctor or surgery. This conduct took off after the target schemes started, it has nothing to do with your health. There were circulars directed at doctors for many years suggesting they chase and place as much pressure on women as possible to reach their target and collect their money. That won’t be changed easily, we all need to make a stand.
    I’d urge you to pick up the phone and report the surgery.
    Don’t throw away the letter, they can take action on the letter alone…arranging an appt you didn’t ask for, for an optional screening test, is presumptuous and unethical.
    Their “invitations” need to change, they should mail out an unbiased brochure (although I’ve never seen one) and leave it to the woman to make an appointment if she wants one.
    No more opportunistic smears should be taken either – it amounts to ambushing the woman.
    The way you were treated is manipulative and carefully put together to FORCE you into screening and with no information and no respect for your rights. We have to stop this widespread practice.

  • Brian

    I always thought cervical cancer was more common than breast cancer. All the womens mags dedicate so much time to the test that I thought it was the No 1 threat to women. And doctors talk about the test in such a serious way like every second woman gets this cancer.
    I was totally fooled.
    To think breast cancer affects 2000% more women than cervical cancer!
    The pushiness makes some sense I guess. If you need to find a few women to show that screening works, you’d have to screen almost everyone. That explains the pushiness, it doesn’t justify it though. The incorrect results add another unfair layer.
    This test is antiquated as well. Men have a blood test for prostate cancer, yet women are still waiting for something better than the pap smear.
    I can see why women are angry about this, I would be too.

  • Anon

    Why not restrict this testing to high risk women, if less than 1% of women benefit from smears?
    That way you’re more likely to catch the right women and reduce the harm to low risk groups.
    Doctors take it too far the other way – testing virgins, women who’ve had full hysterectomies for benign fibroids or for menstrual problems, the very young, the elderly and low risk women.
    That’s why the damage is so great.
    My partner and I have only slept with each other, yet doctors don’t see a defference between my risk and how often I should tested and that of a woman with lots of partners, smokes and has other risk factors.
    Applying some commonsense would improve the situation and reduce the harm.
    We should be told the truth, then we’d all know were we stand and could protect ourselves from cancer and excessive treatment.

  • Mike

    I hope this comment is allowed to be posted…
    Men are still free as always and Women would not be having their rights violated if birth control was available over the counter here.
    This is a very interesting pro/con discussion on having BCP available w/o prescription.
    http://www.bmj.com/cgi/section_pdf/337/dec23_2/a3044.pdf
    Notice the Pro side is from the Medical Doctor in San Franciso? Cool place.

  • Stephanie

    Some women get upset if anything negative is said about pap smears. Probably because many women have been through biopsies and genuinely think a pap smear saved their life. They can’t be blamed because everything we’ve ever been told suggests exactly that…
    I’m not one of those women. I want the facts and I want my choice respected. I don’t wish to be sheltered from the facts.
    I’ve only been given one pamphlet on screening and I went looking for it last night.
    Nothing in that pamphlet gives me the information that I needed, the things that are most important.

    Two things:
    a) Exactly how many women benefit from screening? If it’s 0.65%, I want that figure clearly stated in the pamphlet. If it’s 50%, I want that stated…
    b) What are the risks of testing? Exactly how many women will be affected by false negatives and false positives. I want that figure, no matter how high or low it is. Do almost 100% of American women have colposcopies and 77% of Australian women? It’s my opinion that matters…whether I think those procedures are minor or serious in nature and might influence my decision to screen.
    Neither of those questions were answered in the pamphlet. In fact, the wording appears to have been carefully chosen to give me very little specific information. It’s quite general and no real figures are given except to say screening will catch 90% of cervical cancer. 90% of what? Is that 5 women or 50,000?
    This test is not medically required for contraception and doctors should not be allowed to use it to almost blackmail women. Cancer screening is an option, not a law.
    I have some very specific questions for my doctor and I want specific answers.

  • Hildy

    I’m very pleased to find this article.
    I’ve been searching for answers and that’s not easy with no medical training.
    My husband is 20 years older than me and we went to the doctor recently for our swine flu injections. My husband is 50 and the doctor took the opportunity to have a chat to him about prostate screening. The pros and cons and the risks. There was a calm and supportive airing of the screening and no pressure at all was applied by the doctor.
    It struck me…
    I’ve never been given the pros and cons of cervical screening and it was put to me in such a way as to imply I had no choice or no real choice. I think most women would agree we’re not supposed to think about the value of this test, it’s just something we have to do to be healthy and safe. We don’t even think of it as a screening test that can be refused.
    I wondered why we’re not given the same information and doctors don’t feel they have to actually ask us if we want the test.
    Now I discover that there are 200,000 cases of prostate cancer and 11,000 for cervical cancer.
    Can anyone explain to me why women are given no real choice and no real information (if any at all) when we have a much lower risk of this cancer? Men have a much higher risk and doctors ask them if they want testing and go through the pros and cons.
    Then I find out that doctors in some countries are paid to screen all or almost all of their patients and that explains at least some of the pressure and the attitudes we see around us.
    Our governments feel it’s proper to pay doctors to pressure us to screen for 11,000 cases…but don’t pay doctors to screen men for 200,000 cases.
    Does anyone have any idea why this should be okay for women, but not for men?
    I have read a bit over the last few days and the very high rates for biopsies is another horrible surprise.
    I asked my Dr about this and didn’t really get an answer except to say it may be paternalistic attitudes still exist in the profession and government.
    If that’s the case, we need to lobby and change that attitude.
    A few posts I’ve read recently make the point that rare cancers need rigorous testing of very large groups to make a difference.
    Even if that’s true, why haven’t we been let in on that fact?
    Instead we’re told this is a common cancer and this is an easy test with no side effects every woman MUST have regularly and we’re constantly reminded of those facts throughout our lives.
    Now it feels like we’ve been misled and they are not facts at all.
    I feel like everyone has been part of a major conspiracy that goes to the heart of my health and rights and I’ve just found out about it.
    What can we do about this apart from speaking out to our doctors? Many women are still laboring under misapprehensions.
    Many women struggle with this screening and we all deserve the truth.
    Dr, I join the others in thanking you.
    You are indeed a doctor in a million. You have some seriously good karma coming your way!

  • Indigo

    We should all be told about cryo and biopsies before we have testing, because it always happens, and usually within the first few years of testing. So…young woman have lots of false positives, at last, it makes sense. We think this is all about cancer, when all along it was just an unreliable test putting most wof us through treatment.
    No wonder they wanted to keep that quiet!
    I guess all those treatments have been profitable for doctors and hospitals.
    I’ll be looking into this testing very closely – thanks for the info, Dr.
    I’d never let a Dr push me into testing to get the BCP. I always knew that was over-the-line and a try-on. If I have the test, it’ll be my choice and thanks to Dr Sherman, that will be an informed decision, not one based on misleading info, omissions and fear.
    The stats are fascinating too and tell a very different story to the one told to us by doctors. This IS like propaganda…trying to make it sound prolific and making out the test is problem-free. That’s really bad, change needs to happen right away.
    I guess that starts with all of us…refusing to allow doctors to get away with this and only seeing doctors’ who’ll listen and respect our rights and wishes.

  • Stacey

    I have the same problem as many other women who’ve posted here and elsewhere.
    Most of our doctors will continue with their annual recommendations for pap smears. We all know (now!) that annual smears are not recommended and not before you’re 21. Yet my doctor and many others will continue to recommend annual screening and demand it before giving you pills.
    These doctors know their requirements are not recommended for good reasons. It causes too many biopsies and unnecessary treatments and for no additional benefit. It’s over-kill that leads to harm.
    My husband and I are still studying and I don’t want to rely on over-the-counter things like condoms and risk an unplanned pregnancy. Unless I agree with annual smears, I can’t get pills. Even the ACOG says annual smears and before age 21 causes too many biopsies and harmful treatment. My choices are to submit and face biopsies or LEEP or go off birth control.
    I can complain to the Medical Board and contact my insurance company. The last option is more likely to be successful as the insurance company pays for excessive testing and treatments. I plan to write to them right now. I think we should all write to our insurance companies and lodge complaints with the Medical Board.
    I rang my doctor’s rooms today and they confirmed they won’t be following the reduced recommendations. (I got the feeling quite a few women had been asking) The bottom line:
    If I’m not prepared to have annual screening, they can’t help me with birth control. She added that if I went off BC, they’d still want to see me for annual pelvic and breast exams. What a nerve! Both of those exams are of doubtful value.
    Isn’t it great that this is the only way most women can get birth control?
    The recommendations are there to protect all of us but most doctors carry on with their own “requirements” based on…what? Do these doctors know more than their own college and of those around the world? I feel so strongly about this that if the insurance company can’t find a doctor who follows the reduced guidelines, I’ll go off Pills and use something else in the future and they won’t be seeing me for pelvic and breast exams. (I’m still reading about those exams but they don’t sound like important health checks of proven value.) Is anything they do of proven value? Is it all excessive or of doubtful value?
    Thanks, Dr Sherman.

  • Melissa

    Yes, I think so…
    I live in the UK but have an American husband and lived in Texas for 5 years. I know the gyn exam is not recommended in the UK. It’s not really worth bothering with if you don’t have any symptoms that need exploring…one doctor told me it can put you in an operating theatre for harmless things.
    Pap smears are over-used in the States and that’s why so many women end up with damage to the cervix and to their minds. Speak to a group of young women and it’s really shocking how many have already had biopsies or LEEP.
    There is more honesty in the UK and less of everything in a medical context…exams, tests and treatments. I feel there is less emphasis on cancer and more on living.
    I know many American women would like to do away with the annual gyn exam – go ahead, it’s of no to little value anyway. Don’t let doctors pap smear you to death either. They will if you let them. Don’t let a doctor hold your pills until you agree to smears. Just go to Planned Parenthood, they have more commonsense than to refuse a woman contraception and risk pregnancy to cover a very small risk of cancer.
    If you’re worried about this cancer, think about the UK testing time frame which starts when you’re 25. Any more than every 3 or 5 years and you’ll end up like most other American women…in stirrups having your healthy cervix “treated” for “pre-cancer cells”
    Not a fun thing to do!
    It’s only when you see how things are overseas that you see the US womens preventative care for what it really is….excessive, dishonest and harmful.
    They do pressure you to test over here but it’s a vast improvement on the States. Doctors here have eased up on the pressure in the last couple of years probably due to more criticism of the testing and concerns about informed consent.

  • Lucia

    The pressure on healthy women to have yearly gyn exams “to be healthy” is strange. Doctors know they are of low value. I initially thought lots of women had “problems” as they all seemed to be off to see the gyn.
    Your problem of over-everything in that area is due mostly to these exams. Having a gyn as your main doctor is most of the problem. Not really a shock to hear they over-do it in this area.
    Our gyn’s are not primary doctors but specialists and you need a referral from your GP. You don’t see gyn’s for a pap smear, your general practitioner would take care of that. Your gyn’s must rely on the income, which would be huge and yearly smears keep women coming through the door and you end up getting the works, pelvic exams…they’ve got you there. If you don’t think you need a yearly once-over in the gyn area, then these drs would see patient visits plummet. Our gyn’s are busy and I’m sure wouldn’t welcome healthy women coming in to have their ovaries checked. I’ve never read anything that convinces me that these exams are important for a healthy symptomless woman. I looked at a few articles and spoke to my dr when I came home. Apart from US websites for gyn offices (advertising) and light weight health sites, I found nothing. I looked at a great article that concluded the exam is of low clinical value in symptomless women and not recommended as a screening tool for ovarian cancer. All the articles I read stressed the last bit, the fear being the removal of healthy ovaries after a false positve exam.
    I know there are a few well written and easy to read articles on line if you search, “the value of the routine pelvic exams”. Look beyond the ads and fluff, go to the medical journals and scholarly essays. Their words don’t back the ads and fluff.
    I think the “ads” claiming these exams are important for all women are disingenuous.
    If women saw a general dr when it was necessary, I’m sure much of the over-everything would be reduced. Maybe you’d have a better chance of shaping the consult as well.
    Dr Sherman’s blog has a link to a few articles on point, and an excellent one by Heather Dixon.
    Whether you have screening or not is one thing, but it should be YOUR decision, that’s the important thing and you shouldn’t be misled as to the “importance” of yearly gyn exams. My US friends loathed those exams and all now have those links. I hope some of them will feel confident enough to consign them to the scrap heap where they belong….fear will keep some women in stirrups but these women are intelligent & educated women. We don’t stand back and LOOK at what’s happening, until we’re forced to or when we’re looking for an out or explanation…
    I hope I’ve given a few of my friends an “out” or some ammunition to take back to their drs anyhow. When an exam is of low value, that should be explained to you beforehand, it should never be pressed on you as “important”.
    Enjoyed reading this article.

  • Elizabeth

    Anyone interested in making some sense of screening should read, “Screening” by A Raffle and M Gray…(Oxford Uni Press, 2007)
    One of the things that occurred to me after reading the book: (my thoughts)
    How our perception of risk can be manipulated by these programs to change something we don’t even think about into something we fear greatly?
    Did you know that mouth cancer occurred at the same frequency as cervical cancer? We have a screening program for cervical cancer and the aim is or was to get women into screening – informed consent was never really a consideration. The information was presented to make screening sound more attractive and beneficial than it actually was and this cancer a bigger threat than it ever was and risk was played down or not mentioned at all.

    Isn’t is interesting that no one would worry about mouth cancer, yet cervical cancer is talked about endlessly? Why the difference in our perception of risk? I think the aggressive and unbalanced promotion of this test and the campaigns designed to get women into screening accounts for it.
    Many women would say that a woman avoiding screening is running a high risk. In fact, the risk of this cancer is low…depending on the research you read, with no screening, your chance of NOT dying from this cancer is 99%….if you wanted to be very conservative, you could say 98%.
    Yet all screening does harm….and cervical screening causes lots of harm through overdiagnosis and treatment.
    The book talks about the “popularity paradox”….the more unreliable the test, the more popular it is….to use cervical screening as my example – as more and more women have false positives or receive treatment for things that would have regressed or would never have advanced, many/most of these women will believe screening saved their lives.
    The book has a chart that shows annual screening means ALL women will have a false alarm in their lifetime.
    If this small risk worries you, the 3 and 5 yearly schedule from age 25 or 30 and stopping at 50 or 55 exposes you to less risk. The added benefit of annual and 2 yearly screening is too low to calculate.
    The book also explains why the annual physical happens in the States. A lengthy study in the UK showed the annual exam was of no benefit and so it never came into practice. It was promoted in the States for reasons unrelated to proven benefit…but rather by insurance companies wanting to minimize risk and employers wanting healthy workforces to reduce the cost of illness and injury.

  • Dr. D

    I want to get some basic information into the discussion, as it can be nearly impossible to decipher much of the data being thrown around.

    - Cervical cancer is the leading cause of death for women in places in which there is no “Pap” smear screening. It is a horrible way to die (if one can rank such things) and often affects women in the prime of life. Deaths from cervical cancer have been almost completely eradicated in countries that provide regular pap smear screening for all women. This was true even before all of the newer technology like thin-layer liquid-based smears, HPV testing and computer-aided screening. This success in finding “premalignant-phase” lesions and having the ability to effectively treat them in this phase with little to no morbidity/mortality is the very model for all other attempts at cancer prevention in other organ systems. Don’t let the fact that most of us (in 1st world) don’t get to see anyone die from cervix cancer skew the estimation of the effectiveness of this screening.
    -Consquently, if one uses risk-of-death-from-cervical-cancer numbers from a country with successful screening, the numbers will be very low and not give an accurate picture.
    -It is also important to suss out whether reported numbers in studies are talking about invasive cancer, high-grade noninvasive lesions, low-grade noninvasive lesions, borderline results or some combination thereof. This can dramatically affect risk projections and outcomes.
    - Be careful of whether a study is referring to “pelvic exams” vs cervical pap smear screening. Very different things.
    - A single pap smear test has a significant risk of a false negative result, but the risk (of false negative) for participation in a regular screening program is very small. For example, it is not rare for a lesion to be missed on a single pap smear, but it is very rare for a lesion to be missed on 3 successive smears. Getting into these types of statistics and calculating effectiveness of various screening intervals and algorithms is where the bulk of the debate occurs.
    - Similar cautions are required for interpreting what is reported as a false-positive screening result. Biopsies, colposcopies and negative biopsies are an expected part of the screening and cervical cancer prevention algorithm.
    - It is known that somewhere less than half of even high-grade noninvasive cervical lesions will progress to true clinically deadly invasive cancer if left untreated, but unfortunately there is currently no way to tell the “good” ones from the “bad” ones. So the only effective choice is to treat them all at this point, even though technically approx 60% of those treatments are treating clinically benign lesions.

    I hope this helps somewhat. I agree totally with the need for informed consent and an individuals right to choose treatment/screening etc. But make sure you are truly informed. My best advice is to find a healthcare provider who will decipher this stuff for you and stick with them. Please do not interpret all of the recent reports that we can do with less cervical screening as meaning that you should go with NO screening. No one is saying that.

    I am a an MD, Gynecologic Pathologist for those wondering. It would be my profound delight to see cervical cancer (and the need for screening) go away tomorrow if it could, and my career would be just fine anyway (for those hypothesizing some commercial interest bias).

  • Sarahw

    I’d like to see a physician comment here on the practice of extorting tests, pap smear in particular as a necessary condition of receiving a script for hormonal birth control.

    Here is a Ph.D. who defends the practice http://tiny.cc/0Co2H ; the paternalism of this response is shocking.

  • lazydaisy

    “- Cervical cancer is the leading cause of death for women in places in which there is no “Pap” smear screening.”

    http://www.who.int/mediacentre/factsheets/fs334/en/

    Not according to the World Health Organisation. If you scroll to the table at the bottom, it’s not even in the top ten for low and middle income countries (where there is the least screening going on). Listed as 2nd highest CANCER among women in poorer countries, not as the leading cause of death for these women – there are a number of equally unpleasant illnesses ahead of it.

    “Biopsies, colposcopies and negative biopsies are an expected part of the screening and cervical cancer prevention algorithm.”

    Expected by whom? Not by many of the women involved it would seem:
    http://louisville.edu/medschool/behavioraloncology/presentations/perceived-cervical-cancer-risk-among-women-undergoing-colposcopy.html

    and

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361408/

    “It is also important to suss out whether reported numbers in studies are talking about invasive cancer, high-grade noninvasive lesions, low-grade noninvasive lesions, borderline results or some combination thereof. This can dramatically affect risk projections and outcomes.”

    You’re the MD, perhaps you could tell us? If a screening programme did not exist, how many women a year in the US or UK could expect to develop cervical abnormalities advanced enough to seriously threaten their health/life and requiring major surgical/chemo/radiotherapy treatment, i.e “Cancer” as it is commonly understood by the layperson? There seems to be no problem getting this kind of blunt overall statistic for other cancers.

    “I agree totally with the need for informed consent and an individuals right to choose treatment/screening etc.”

    Excellent. How do you suggest as a medical insider we best go about ensuring this?

  • Ruth

    My reading doesn’t show that cervical cancer was the leading or even a leading killer of women in the UK before screening. It was always uncommon. It was declining before the screening programme was established and I’ve seen reports that screening may have been a reason for some of the fall, but certainly not all of it.
    Overdiagnosis is impossible to deny and all the negatives it causes. Yet most women don’t know much or most of the treatment is over-treatment or how likely it is that they will have these procedures. Is that acceptable?
    Men have a choice with testing for VERY COMMON prostate cancer. How could anyone suggest the current accepted system of forcing and frightening women into screening for a rare cancer (always uncommon) that leads to so much overdiagnosis and “treatment” in such a private and delicate part of our bodies, is the right way to handle this screening? Has everyone forgotten?…this is screening!
    It doesn’t stop being screening, “an optional extra” that requires informed consent, because it’s directed at women.
    We are no different to men and our rights should be respected. If some of us decide we don’t want cervical, breast or any other sort of screening, that should be our business. I’m sure cervical cancer is a horrible death. I’m sure prostate cancer is a horrible death. Yet no one would ever say that men should be forced to have screening even though it’s a MUCH more likely death for a man or have their meds held as hostage until they agree.
    Thanks you for your comments…I welcome all comments on this topic. The only disappointing feature is that its taken so very long to get to this stage. Any critical talk in the past has simply been shut down.
    I feel that most of this discussion is about our right to the actual FACTS and respect for our right to choose. Every death from cancer is horrible, but I don’t like the way that is waved at women like a red flag, yet never aimed at men. I think it’s time the profession dropped the scare mongering and started to treat us respectfully.

  • Anon Woman

    If even one dr reads all of this and goes away and thinks about his or her attitudes and practice, then this article has achieved a huge amount.
    It’s clear many women just want a say in all of this and want clear facts and stats, not things made up to “promote screening” that leaves us as ignorant as we were before we picked up the pamphlet.
    That’s all….

  • Jessica

    To get this straight…a small no. of women are helped by screening and a much larger group are treated for no benefit at all and may in fact be harmed by the process…they wouldn’t have needed treatment and would never have been worried by this cancer, but screening and an abnormal pap changes that…
    With the large gap between numbers saved and over-treatment, that makes informed consent very important. If the current “approach” is fine for cervical screening, then – why isn’t prostate screening managed in the same way?
    It would make more sense as it strikes 200,000 men. (even though I’d never agree it’s an ethical “approach” for any screening)
    Doctors are paid to reach targets for cervical but not prostate screening. Men aren’t pressured (or not as much) and their drugs are not held until they’ve all had their screening.
    If this isn’t paternalism…then, what is it? Can anyone explain what else it could be?
    I never knew just how low my chance of being helped by paps actually was nor did I know that most of this treatment is over-treatment and the chance of it happening is high and made even higher by too frequent screening and having paps before you’re 25.

    Now to add a human element, to put a face on the statistics.
    My sister had a negative cone biopsy at 23…it was an ordeal.
    These facts convince me her abnormal pap was probably caused by over-screening, making it necessary to “treat her just in case”.
    Her cervix bears the scars and she might have problems if she has children.
    My sister and I should have known all of these things. I’m sure our doctors’ were aware of these facts and for whatever reason, chose not to inform us. Why does it seem to be accepted that doctor’s can keep secrets from us? If this is an outstandingly successful screening program as we’re told it is, then…why the secrecy? If running us through this testing and treatments like a bunch of ignorant battery hens can be defended, I’d like to hear it.
    These are the things I don’t understand and can’t forgive…
    If putting women in great numbers through an ordeal is the only way to find a handful of cases, we need to know exactly what is going on…and not just pushed blindly into screening.

  • Bella

    I’m curious whether Dr. D., as a Gynecologic Pathologist, has read Dr. Angela Raffle’s book Screening? I’m interested to hear his thoughts on her research, particularly on her findings that (1) in the U.K., cervical cancer was declining at a rate of 1% a year before and after the pap smear was introduced and (2) 1,000 women must be screened for 35 years to save one woman. According to Raffle, the lifetime risk of cervical cancer is 1 in 126 as compared to 1 in 23 for lung cancer. She says, “We are conning women into being grateful when the risk was never that high.”

    I’m tired of the illogical arguments that (1) cervical cancer is bad, so screening for it must be good, and (2) cervical cancer declined in the years following the pap test, so pap tests must be the reason. Many other factors have changed over the last 50 years (a huge jump in hysterectomies, more condom use because of HIV, etc.).

    The effectiveness and risks and benefits of screening tests must be evaluated in randomized controlled studies, or how can we actually know whether they work? Meanwhile, women deserve informed consent.

  • Alexandra

    I think many women are boiling over with anger and frustration at the injustices being done to us.
    The risk in Australia is one in 200 and lung cancer is about 1 in 23…
    No one worries about lung cancer though, no money in that….reach your screening target by pushing women through the program and collect your reward from the government.
    Informed consent? Respect? Risk information? Right to choose? Voluntary program?
    Are we talking about the same thing?
    Cervical screening was never a screening program, screening programs require all of those things and none of those things have ever been part of cervical screening.
    Breast screening, well, proving to be trickier….they haven’t worked out how to corral women into the chute – perhaps setting up screening centres at doctor’s surgeries and target payments might be the next step…why not? All of this is fine when you’re “targeting” women. All the publicity about the risks of mammograms that’s leaked out is a problem though.
    We’re not supposed to know about that…it has nothing to do with us. We’re just breasts to be screened and counted…a cervix to be screened and counted.
    Is there a body and mind, a person with legal rights attached to breasts or a cervix?
    Isn’t it amazing they have the arrogance and nerve to call them “screening” programs?

  • VM

    I compared my healthcare to my American friend’s care and the difference is terrifying.
    I posted to Dr Sherman’s website and tried to copy it across and lost it…haven’t got time now to copy it over again.
    Let’s just say Jo’s list is long and all very unpleasant stuff.
    My list is too short to bother talking about.
    All American women should take the time to do some research for the sake of their happiness and good health. Your doctor’s have been leading you down the garden path.

  • Merrill

    I’ve never felt in control of my health care. The doctor was in charge and making all the decisions. I wasn’t even consulted most of the time. I can’t recall any doctor asking me if I wanted to have a pap smear, pelvic or breast exam.
    For years I thought paps were for uterine and ovarian cancer. I thought it a bit strange that that part of my body got 80% of the attention and thought cancer in this area must have been very common. Now I can’t understand why our exams are mainly around that area…it sounds like all these cancers are not common at all.
    I’m sorry I gave in to them without much of a fight or looking into it further. These exams were a negative in my life. I hated them.
    Every woman should be in charge of her health and make her own decisions about tests and exams.
    Many women become docile and robotic in the exam room. It’s the only way we cope…
    I was feeling guilty about avoiding a gyn exam for 8 years. I couldn’t make myself go, I’ve had enough. Great to know I don’t need them, shattering to think I never needed them or they should have been optional anyway.

  • Lisa

    Paps are imposed on women or forced on us or we’re imprinted from early teens to have paps. I grew up knowing we HAD to have paps. Funny how cancer screening tests are pushed at us in such a way we don’t think we have any say in it. They make us think it’s like brushing our teeth, something we do to keep our teeth healthy. Paps were something you did to be healthy.
    But how can you have no say in screening, something that has risks? I didn’t know about the risks until a few weeks ago when the new guidelines were released and they were talking about annual screening causing problems for women. Doctors have known about this for years and still made us have annual smears risking our health. This is the problem when you let someone else make decisions for you. Only we care enough about our health to look at both the benefits and the risks.
    My doctor said it was time to start paps and that every woman had to have them no matter how much she disliked them.
    I always get nervous and feel a bit sick with these exams. The doctor says not to be embarrassed because it’s part of the job. I was talking about my feelings, how the doctor feels is not really relevant. I felt my feelings were not even valid, let alone free will or informed consent.
    This article is the first time I’ve read or heard anything about informed consent.

  • Anonymous

    Dr D
    I queried a few things in your post. Do you have a reponse?
    Kind regards
    LazyDaisy

  • Jessica C

    Isn’t it scary that we can be manipulated so we can’t SEE what’s happening?
    Everything finally falls into place.
    I don’t think many doctors worry about informed consent when they’re dealing with women and screening.
    Numbers, coverage, targets…whatever you want to call us, is apparently the goal.
    My brothers rejected rectal exams. No letters, no calls, no TV ads, no scary posters or signs on buses, no flags on files. No pressure at all…but prostate cancer is 200,000 cases versus 11,000 for cervical cancer. (??)

    Is it….
    a) doctors put money and targets ahead of us & keeping us misinformed/uninformed is the easiest path to that goal.
    b) doctors don’t see informed consent as an issue in their dealings with women for various reasons.
    c) doctors are pressured by those above them and by the govt to reach targets and this is the only way to reach that goal. This also means doctors have chosen to go along with that rather than risk their jobs or speak out in protest.

    The pap smear “everything” has always irritated me. Using tactics to get women to have a smear is shocking. (and it turns out the risk is tiny!)
    Liz mentions UK doctor’s “stand over” women who are reluctant….that’s correct, my niece was “stood over” by a Dr until she agreed to a smear. The poor girl had a stomach upset and ended up having a smear. She didn’t want the smear, but felt pressured and unable to refuse or leave.
    This is very common and encouraged by the program.
    I was angry to see in a link provided by a previous poster that doctor’s are advised to pressure women to have smears on the spot, whenever they visit….an “opportunistic” smear.
    Not even basic decency is extended to women – the right to get treatment for a stomach upset and be given a chance to consider whether you want a smear.
    She got no sympathy because so many accept that doctors can do ANYTHING to get a woman screened. (short of physical force)
    What’s next? Stopping women in the street, checking a list for compliance status and forcing us into an exam room. Would that be fine as well? Putting up our health insurance premiums until we’ve been good girls and screened.
    Why have we allowed this to continue for so long? How many of us feel fearful if we don’t submit and bitter when we do? How many feel they screen, fully aware of the facts and risks, and having made the decision themselves free of pressure?

    Does anyone remember the buses used in the UK to increase “numbers” of women having breast screening? The ads said “One in 8 women will get breast cancer. Have your mammogram today.”
    I in 8!…
    I then saw a small bit in the paper a few months later that said the number wasn’t “actually” 1 in 8…that was the figure “assuming” all women live into their 90′s…

    But most women don’t live into their 90′s.

    In other words, the figures had been “fixed” to mislead and scare women into mammograms. Yet this confession was only newsworthy to the extent of 8 lines on page 13 or 15.
    The real figure is one in 68 or 70.

    I’m unaware of any public backlash over that deliberate misleading of women. It’s the usual approach, so, there were no repercussions, no enquiry, nothing….
    The “acceptance” of targets, numbers and coverage as the only measure of success in breast and cervical screening goes to the very top. ANYTHING is fine if it increases numbers screened.
    I did see a Dr asked about that figure a year or so later and he said, “we didn’t correct the figure because we didn’t want to confuse women”…
    What is an insult to our intelligence!

    We need to change this right now….every one of us should force change – make our doctors respect us as individual patients, and not numbers and pounds or dollars.
    That breast screening ad scared many women into screening…did any of those women provide informed consent? What about the women hurt in the process? Because most of them are uninformed, there will be no legal action or anything else. Keeping us ignorant is the secret to their success.
    The next time a Dr asks me about screening and becomes rude or patronizing, I’ll say, “Sorry, are you behind in your screening target?” or “Have you heard of informed consent?”
    I’d recommend this to all women – let them KNOW, WE KNOW what’s going on and it’s unacceptable.
    Some doctors probably feel badly about this and some may not be aware of the real facts themselves…our numbers can educate them and lend our support to changing very bad attitudes and treatment.
    This is the most important human rights issue in medicine as it affects all women and has been completely ignored.

    Thank you for making me a happy woman.
    This is the most productive discussion I have EVER seen on this subject and Dr Sherman’s website is important reading for all women.
    Some doctors are wonderful, ethical and caring and on our side. Now we need to increase their numbers.

  • WP

    I thought pap smears were very important and women who didn’t have them were taking a big risk. It would amaze me to hear a woman say she didn’t have pap smears.
    I feel a bit foolish now and annoyed I just accepted the brochure and the word of my Dr, as truthful representations of the test.
    When lots of women have abnormal smears and colposcopy, it all heads in one direction…this cancer is extremely common.
    Wrong, it’s a hopeless test. I didn’t think of that.
    I’ll be spending the holidays doing some reading…I’ve printed out several of the articles linked to the Dr’s site.
    It really is a lesson not to believe everything we’re told and not to make assumptions…look for the evidence.

  • Steve

    If a male might add to the discussion…
    Women’s health care is more political and social than medical. If you look at breast and prostate screening they’re both for very common problems. Screening tests are usually for common problems.
    Cervical screening was far from a perfect screening program. The cancer was rare and the test produced lots of false positives and negatives; over-treatment was a given. In the early days of the program, many women had unnecessary hysterectomies. The program has been refined over the years, but it’s still far from perfect.
    With this sort of test and disease, you must screen 80% of women to have a viable screening program. You need a viable program to show a fall in the death rate and show it’s a good use of scarce resources.
    I think money spent almost anywhere else would save more lives, like heart disease, diabetes and breast cancer.
    Because you need to screen 80% of women you need to be sure that women will find the test acceptable and agree to screening. I think this is next sticking point…many women don’t find the test agreeable. We then find governments and doctors finding ways to increase uptake and many of those things are definitely unethical.
    This is also why doctors made the decision not to release to women any information that might affect uptake and risk information might do that…
    You have to ask yourself…if fewer than 80% of women would agree to the test if they were informed of the rareness of the cancer and the risks of an inaccurate test, was it an appropriate screening test?
    I think women have made it clear they want the truth. I’d feel the same way. If fewer than 80% want the test, then these programs should be discontinued and the funds spent on research for a range of cancers or elsewhere. Women who still wanted the test could still obtain it privately.
    When my wife found out the risk of a false positive was so much higher than a diagnosis of cancer, she stopped testing. She wouldn’t have started testing had she known the cancer was rare.
    I think paternalism is a factor too….doctor knows best…but times have changed and women clearly don’t appreciate that sort of sexist attitude. We’re seeing more honesty with breast screening and it’s time we saw more honesty with cervical screening.
    This Dr is to be congratulated for raising an uncomfortable truth.

  • Marie

    Pap smears have been around since the 50′s and now we’re haring about risks. I find it hard to comprehend how this has avoided the newspapers. It’s the opposite of what we’ve been told for decades. The opposite, not a little different or a tweak here and there
    Rare cancer, high rates of unnecessary LEEP and biopsies does not mean common cancer and lots of pre-cancerous women saved by treatment.
    I didn’t know there was another side to testing…might be time to take a fresh look at screening.

  • Ellen

    I knew something wasn’t right years ago. I’m still not sure about most of it and that’s not good enough. We need far more info.
    Many women have abnormal smears which are scary. We think we have cancer or almost had it and I’m not sure that’s true. My first pap was abnormal when I was an 18 year old virgin. The only info I could find talked about sex being linked to this cancer and more than one partner. I couldn’t work out why I had abnormal cells when I’d never had sex or even foreplay. Pap smears and treatment are very embarrassing and worse when you’re young. I went along with it for 6 years and had many pap smears over those years and had cells taken off as well.
    It ended with a cone biopsy 5 years ago which took place in hospital. I took medication for anxiety for a year after that.
    I haven’t had testing since then. I was afraid my whole life would be spent having tests and treatment. That would be a life not worth living. All the pleasure had been taken from my life and my innocence and dignity. The testing and treatment was making me sick in body and mind. My cone biopsy had been non-cancerous. It made me feel like I was being treated for nothing and on a merry-go-round that was never ending. I found a website earlier this year that said smears don’t work for young women and virgins shouldn’t have testing either. It was a Dutch website for foreigners living in that country. I sent an email to a Dutch Dr and for the first time got some helpful info.
    I won’t have testing again. After reading these posts, every woman should read up and make sure pap smears are a good idea at any age. I’m not so sure. The hard thing is finding a truthful doctor to advise you, they all have pap smear fever and don’t care about putting girls and women through pap smears and treatment and more pap smears and treatment. When everyone has pre-cancer cells or non-cancerous biopsies, something isn’t right. Someone isn’t telling us the truth.
    I’m nearly 30 and I’m not afraid of cervical cancer. I’m afraid of this test and won’t give it another 6 years of my life. Finding out it’s a rare cancer gives me more peace of mind.

  • Pauline

    The comments on this blog keep growing! This prompted me to contact my local (Canada) medical board and ask if the board supported their (yes, their members – it’s internally regulated & administered, pls excuse the pun) members in this routine testing w/o any real informed consent. They actually told me that doctors could do ANY tests THEY felt were necessary for the proper administering of ‘care’. Care???? CARE? Since when does going in for an ear infection or stomach ache (as I’ve seen some of the Europeen comments note) involve screening for cervical cancer? Or going in for birth control? By some luck, I managed to find the World Health Organizations “Medical Eligibility for Contraceptives” chart. It listed every contraceptive out there and ONLY a Pelvic Exam was suggested for the diagphram/IUD method. All other methods had NO tests suggested – nor REQUIRED. Even the blood pressure test could be skipped. I plan on making a complaint with the Canadian Human Rights Tribunal. This is crazy craziness. Not just a little crazy. I suggest everyone does the same or else nothing will change since it appears that the medical profession is self-regulated and all complaints to the medical board will just result in justifications cloaked under “care” and medical “expertise” vs. hey, it’s MY body and I get to decide whether or not I get screened for ANY thing. Period.
    I.Q. “test”, anyone?

  • Carrie

    Ladies, regarding doctors not giving you contraceptive pills unless you consent to Pap test:
    http://www.springerlink.com/content/x01818486xh56816/fulltext.pdf?page=1
    It’s right there in black and white. Print it out and take it with you = “…Other procedures, such as pelvic examinations, blood pressure readings, and cervical cancer screening, may be important for good reproductive health, but are not necessary for the safe use of…”
    Oh ya, and if so-called “Emergency Contraceptives” are not available without a prescription (!) why not just have regular preventative contracpetives available w/o a prescription? It’s hypocritical to provide contraceptive pills (that’s what the morning after pills are: they are just the equivalent of 4 regular pills – in a certain section of the cycle) to people who have had an ‘oopsy’ unprotected sex — and to withold them to people who wish to be RESPONSIBLE, ahead-of-time/lifestyle planning and life CHOICES. Really really really unfair. We’re about to go into the 2nd decade of the 21st century and THIS is it? No way. I’m living in the Twilight Zone, because, even as an adult woman, who has a license to drive, who holds a ‘prestige’ job, who has numerous responsibilities and commitments and yet I am STILL considered unable to make my own INFORMED DECISIONS about Cervical Cancer Screening.

  • Dr. D

    Hello again all. I don’t think I have much of a chance at overcoming some of the deep skepticism present here, but I’ll try and add to this valuable discussion some of the information that I think is relevant, as I understand it.

    Daisy, you’re not so lazy. I should have stated “…the leading cause of CANCER death among women where there is no screening…” True, it doesn’t compete with clean water, antibiotics and vaccines. The stats vary from place to place, with breast and lung catching up and equaling sometimes, but overall it is still true. The breakout by socioeconomic class on that chart doesn’t help. I think there are overall stats on there that are clearer, unfortunately not broken out by gender (what I could see quickly) but even so you can see the number better.

    I think the data that negative biopsies are not well known to be an expected part of the screening algorithm is a key point that I agree with that the consent is not as informed as it could be. But I wouldn’t use that info to recommend against screening (maybe decreased interval or adjust HPV-testing/Pap smear algorithm). The opposite really. If the argument is just going to be, “you’ll be OK if you don’t get screened,” well then that is true, most of the time, but I think it misses the point.

    If there was an easily recognized premalignant treatable phase to prostate cancer, you can bet the ranch that it would likely be provided to all men free of charge, likely in bars or at football games with a free massage, and they would probably defund breast and cervical cancer screening to provide it. In this sense I think the view of extreme gender bias is true. Witness differences in coverage for, say, Viagra vs birth control and fertility treatments.

    But there is no such thing. No reasonable comparison can be made between cervix and prostate cancer screening. Way different animals. Colon cancer screening with a premalignant adenomatous polyp phase is probably the thing that comes closest.

    Most of the risk data being presented as extremely low is with screening programs. It takes some logical gymnastics to apply that to risks without screening. The history is worth looking at for anyone who has time. No one really knows the exact rate of progression of premalignant cervix lesions to malignant ones precisely because all prospective studies were halted in the early days of Pap screening, when it became clear that intervention was so effective that it would be unethical to just observe woman with high-grade premalignant lesions. So all the data is extrapolated, which is even harder to work with and less concrete and satisfying, but it is clear that many lesions (?half) would resolve on their own without treatment, some are stimulated to regress after the smear/biopsy process (?immune stimulation response), and some would progress to cancer. We just can’t tell which ones, yet.

    PS: To the person concerned about effect on cervix function after cone. Risk is very very low for the shallow type of cones done in last decade or two, even less for LEEP vs cold knife, and there is effective intervention for subsequent pregnancy. While I obviously don’t know her specific clinical info, if the situation led to standard algorithmic rec for cone, I’d recommend to friends and family to do it. (see ASCCP algorithms).

  • LK, Australia

    It’s pointless writing to the government, but your local member might be worth a try. I think the media is the most effective weapon. I would also write to women’s action groups.
    The other thing is for every woman to demand her rights whenever she sees a Dr…resistance will make doctors think about their actions. The problem is many women think these exams are required for the Pill – medically required – we need the word out that gyn exams are optional and preventative (in the States AND that the evidence of their value is poor – these exams are not recommended in Australia) and pap smears are a cancer screening test that requires informed consent.
    I tried writing to the Australian Federal and State Health Ministers last year and got nowhere. Easier to send me a standard letter. It’s media attention and women making a stand that will change things. Our women are over-screened and screened from 18 – far too early – as a result, we have very high colposcopy and biopsy rates. Most women are totally unaware of risk and informed consent in this country. There is no critical discussion at all of this screening.
    It is sexism and paternalistic attitudes behind all of this – we need contraception and we’re easy targets. Men get a choice about preventative medicine and so should we…
    If this program is only effective when you screen 80% of women and pushing women into it and breaching our rights is the only way to get to that figure…then this is an unsuitable screening test. Screening tests for rare cancer are usually rejected anyway…particularly, when they’re unreliable.
    I made a stand many years ago. I got away with it because I’m a lawyer. I know other women would really struggle to have their wishes accepted. I’ve never relied on a Dr for contraception and would not have allowed a Dr to blackmail me into testing. I’m not sure if our doctor’s boycott the Pill to increase coverage…it might not come up very often as most women probably think it’s medically required. I certainly haven’t heard about it – if you look at US websites it’s mentioned a lot…which makes me think it’s not a problem in this country. (I hope that’s right!)
    Good luck everyone!

  • WJ

    Ellen, I’m in the same boat.
    My cervix has been damaged by a negative cone biopsy. My specialist has said that it may cause difficulties for me when/if I have a family and perhaps, later in life.
    I don’t understand what we’re doing to women…the hallmark of womenhood since this screening was introduced, is a damaged cervix. If this cancer is rare, it’s total insanity.
    We need a total and urgent review by an independent board – not doctors….they won’t give us an honest appraisal of the real value of this test and the risks. We also need the facts about this cancer – Is it rare? How rare? What are the risks with no screening? With screening every 10 years? etc Then we can make an informed choice. At the moment, confusion and anger reigns – we know we’ve been lied to…but, what is the truth?

    I bitterly resent the damage to my young and previously healthy body and bitterness is a negative emotion to carry through life.
    I stopped screening 3 years ago now.
    It scares me to think of all the young women who’ll follow me into surgery.
    This shouldn’t be happening….

  • Steve

    Great article!
    I think the small number of informed people are placing some pressure on doctors. Australia has continued to over-screen women even though the risks have been well known to the profession for many years. They have the research from the UK and know other countries have more conservative programs. We even screen teenagers and the damage caused by screening in this age group is very well known. All of a sudden, we see changes in the States and some talk of change in Australia. The UK still leads the way thanks to people like Angela Raffle, Prof Baum and Dr Fitzpatrick.
    I’m pleased Dr Sherman and a small number of doctors are prepared to listen to women, look at the facts and actually prepared to do something to help change a very disrespectful and harmful system. The signs are hopeful. Every article written about this topic makes screening authorities and governments more uncomfortable and concerned about bad publicity, votes and liability.
    The women who’ve complained about their treatment in the past have been patronized and dismissed, now with doctors and governments backpeddling, making changes to programs and introducing “honesty” into screening, who was telling the truth all along? Who was right all along?

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