Comments on: Informed consent is missing from Pap smears and cervical cancer screening

By: Steve

Steve — Wed, 23 Dec 2009 13:18:15 +0000

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?

By: WJ

WJ — Wed, 23 Dec 2009 03:58:26 +0000

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….

By: LK, Australia

LK, Australia — Wed, 23 Dec 2009 00:30:45 +0000

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!

By: Dr. D

Dr. D — Tue, 22 Dec 2009 23:29:38 +0000

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).

By: Carrie

Carrie — Tue, 22 Dec 2009 13:00:04 +0000

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.

By: Pauline

Pauline — Tue, 22 Dec 2009 12:30:29 +0000

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?

By: Ellen

Ellen — Tue, 22 Dec 2009 05:14:27 +0000

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.

By: Marie

Marie — Mon, 21 Dec 2009 23:16:32 +0000

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.

By: Steve

Steve — Mon, 21 Dec 2009 21:32:19 +0000

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.

By: WP

WP — Mon, 21 Dec 2009 13:37:38 +0000

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.