by Joel Sherman, MD
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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Related posts:
- When women should have their first Pap smear; the new cervical cancer screening guidelines
- An oncologist takes on the recent breast and cervical cancer screening controversy
- "The great majority of women in the United States should not be getting MRI scans for breast cancer screening"
- Dying from cervical cancer, and the questions surrounding Jade Goody
- MRI for breast cancer screening
- 15 cancer screening posts you may have missed
- Will the Pap smear soon be replaced by a DNA test to detect cervical cancer?
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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.
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?
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.
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).
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!
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….
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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