Here's a lay article explaining the difficulties of screening for prostate disease. It mentions cervical cancer but glosses over the details as if there were no risks to cervical cancer screening.Prostrate screening problems are real, but cervical cancer screening problems haven't reached many radar screens yet.
Why is that Dr...when the risks have been known for many years? They seem to disregard anything negative about cervical screening.Some of the articles that talk about emotional issues, infertility, pre-term delivery and a few other things date back many years.It almost seems like they don't want women to know about these things, doctors talk amongst themselves about these things, but don't include us.I've often read that cervical screening is the "ideal" or "perfect" test and what a shame they don't have the same thing for other cancers.It's like no one sees the negatives or wants to acknowledge them anyway.Ruth
The imperfect nature of this test is well hidden.There are 55 million smears performed in the States every year and 3.5M are abnormal or 6%...other reports put it higher than that...It's not possible that 3.5M women had cervical cancer or would have developed cervical cancer. The number of women who got cancer before screening started was fairly small (well under 20,000)...that is a LOT of false positives and excessive biopsies.A lot of women are worried by abnormal smears and endure treatment and biopsies who would never have had a problem with this cancer...screening caused the problem.They say NOT having smears is the biggest risk factor for this cancer. It seems having smears carries a high risk of being worried, biopsied and treated for nothing.No wonder they don't put those facts in the brochures!http://www.nccc-online.org/patient_info/faq/woman_exam.html
Coercion and cervical cancer screening and prevention continues...Did you know about half of all States now have a mandatory requirement for girls to be vaccinated with HPV vaccine before they enter the school system.Another demand, requirement and no choice.I don't agree with making screening or vaccines mandatory. Screening for women has always been mandatory, that word is used frequently on health sites, now the vaccine is mandatory in many States.I think many things achieved for women and our rights have never applied in the medical world. We can still be ordered about and voluntary things become mandatory.The drug company clearly have a huge financial stake in this mandated requirement.It really is quite frightening.We are not far away from making these things laws for women, they are already unwritten laws. Dr's can safely abuse our rights, create their own rules, disregard guidelines.I don't see doctors representing our interests. I was hopeful things would change with more female doctors, but they have embraced the "system" and adopted the "thinking" in full measure. http://www.nwhn.org/healthinfo/detail.cfm?info_id=19&topic=Fact%20Sheets
Anon, the article you referenced states that legislation to mandate the vaccine has been introduced in nearly half the states, but not that it has passed in those states. In fact, the proposals were controversial and I don't think most of the states passed it. Don't blame the campaign on physicians; put the blame squarely on big pharma and their desire for profits.Ruth, your question may have been rhetorical but to attempt to answer, Pap smears were among the first and still most successful screening campaigns against cancer. Pap smears were introduced at a time when the negative effects of mass screenings were not widely appreciated. Second looks at screening really are a recent phenomenon along with the heightened respect for informed consent. Ultimately the second thoughts about breast and prostate screening will help for cervical screening as well.
When the risk is small, it shouldn't be a mass screening test. Even if they didn't tie this cancer to HPV initially, they know now what causes this cancer, so why do they still try to screen every woman? Why pressure very low risk women?The damage is done because women don't feel they have a choice and because the test is over-used...low risk women end up harmed when they were never likely to be helped by the test.Even with the reduced guidelines (which most doctors are going to ignore anyway) it's still trying to screen every woman and some would say 21 is still too young and 2 yearly, too often.I doubt common sense will ever apply...change will have to happen individual by individual. Each woman making a decision and standing by that.I wonder why Finland is so very different. This country is mentioned here and elsewhere. At the very start they didn't screen anyone under 30 and only every 5 years. Most women with normal results leave the program at 50 and only have 5 tests. You can see when women have a choice and the testing is not a burden, many women choose to have the testing. It's over-using the test that increases false positives and biopsies and the testing becomes a burden and puts women off. Unethical conduct is then needed to keep up coverage and women resent being treated like children. I see more women questioning the need for annual gyn checks. When women stop having them, they'll be able to avoid the smears. None of the gyn exams that are part of the annual physical are recommended for well women in other countries, not even the breast exam. Surely our doctors could see the Finns had a better balance. One woman said she was free to decline testing in Finland, but because she was high risk the Dr gave her the option of self-testing. She was under no pressure though, as the Dr understood the risk was still low and there is a risk of a false positive and a biopsy.Now we finally have reduced guidelines, but most doctors are going to ignore them! It depresses me to hear so many doctors say they'll still test yearly, test teenagers and elderly woman, even women who've never been sexually active.That's where the profession is wrong...even in the face of strong evidence, they carry on regardless. These doctors also continue to scare women into yearly tests and exams...I think these doctors are only looking after their own interests or can't they read research and don't they respect the opinion of their professional body? Are we arrogant enough to think we are always right despite evidence of harm?We now have women that have been tested yearly since they were teenagers reaching their 60's.When a Finnish woman has no more than 5, 6 or 7 tests, how can our doctors still clock up 50, 60 or more smears per woman and continue to do that? Doesn't it become professional misconduct? If you're exposing your patients to an unnecessary exam that has risks.
Great information, thanks!I saw a news feature similar to this one a few years ago...http://www.nytimes.com/2003/08/12/health/annual-physical-checkup-may-be-an-empty-ritual.html?pagewanted=alland decided not to have an annual physical. I've never been sexually active and checking internet sites from England, Australia and other nations found virgins didn't need pap tests.If I become sexually active, I can assure you I'll be back looking at this site before I agree to pap tests. (it's bookmarked!)Having been scolded about by decision not to have an annual, I'm aware a lot of what doctors recommend is not really necessary and perhaps, might even be unwise.It really is important to make up our own minds about these things.This site is a real find!Belle
It's the misinformation that makes this screening unethical. (together with the pressure, coercive tactics and payments system)If you can't be honest with women, it says a lot about the value of the testing and the risks.I think the misinformation is responsible for most of the anguish and fear.1. Most women greatly over-estimate the risk of this cancer. You even hear virgins saying they're afraid of this cancer.2. Most women think more is better, when annual and 2 yearly smears don't pick up much more cancer, but greatly increases the risks.3. Most women think all the abnormal smears and treatment is about cancer, not false positives.4. Most women think the smear gives them 100% protection and it's totally reliable.5. Most women think an abnormal smear means they're dying.6. Most women have no idea of the risks of testing (false positives and negatives) and of biopsies and the likely benefit.If honesty was the cornerstone with this testing and women understood what they were accepting or declining, I wouldn't have a problem with the program. Ruth
I just read the article by Dr Raffle that is listed in the side bar.I'm still reeling..."For every 10,000 women screened from 1976 to 1996, 1564 had abnormal cytology, 818 were investigated, and 543 had abnormal histology. One hundred and seventy six had persistent abnormality for two years or more. In the absence of screening 80 women would be expected to develop cancer of the cervix by 2011, of whom 25 would die. With screening 10 of these deaths would be avoided. Comparison of cumulative abnormality rates with numbers expected to develop cancer in the absence of screening suggests that at least 80% of high grade dyskaryosis and of high grade dysplasia would not progress to cancer. The lifetime risk of having abnormal cytology detected could be as high as 40% for women born since 1960."Screening saves 10 women in 10,000 over 20 years.Have I read that correctly?I can't remember how many times I've read that screening saves thousands and catches 90% of all cancers and has resulted in a massive drop in deaths.Is that all rubbish?If I've read that correctly, that's a lot of effort and money put into a small result. Not to make light of the lives of the 10 women saved, but look at the crisis in psychiatric care and wait times for surgery...more lives would be saved spending this money in other areas.It sounds like this test should be for high risk women. Also, if only 10 out of 25 are saved by screening, isn't it imperative we make that clear? Women worry too much about this cancer. I'm sure they don't know we're talking about screening helping 10 women over 20 years in every 10,000.Also, that leaves 15 who'll still die, even with screening. I have to agree with all of you...I DO think women have been misled about this cancer and screening. It seems terrible to worry women about something that only bothers a handful of women. The claims made appear to have been fabricated...how does that help anyone?I'm sure the poor women who get the abnormal smears would like to know about all the women investigated to help so few women.It makes me quite cross...The fear of this cancer seems ridiculous when you compare it to the reality.I think worrying women about such a rare thing is hard to forgive or understand.Give women these figures and those that still want to screen, can do so...Dr, you say Dr's may not know all of this, but shouldn't they be expected to know? When so many women are worried and treated for nothing. To think women are driven into testing like sheep being run through sheep dip...many are investigated...all for 10 women in 10,000 over 20 years!Vivianne
The article Beth posted a week ago summarizing the inherent dangers of all screening tests is quite good, and I'll add it to my links.
You have to be a very confident (and maybe highly educated) woman to fight off doctors. They say things like, "how will you feel if you get cancer knowing this test would have saved your life?"...and you see that in our society. If a woman gets cervical cancer, the first question is always about smear tests. If she didn't have them, no matter what the reason, she is condemned as a stupid woman who deserves her demise.There is no hint that a woman has a right to refuse smears for whatever reason.If a woman doesn't have them, she keeps that quiet. No one feels safe to reveal something like that...In effect, they are unofficial laws. The police are after you in the form of other women who "do the right, responsible and mature thing"...or every Dr you see for anything turning into a schoolmaster, or a nurse being sent to your home, or phone calls & letters. It goes on and on...I don't think that's a fair thing at all and it's not appropriate for a screening test that requires informed consent and is supposed to be "offered" to women.Thank you for the article on informed consent. We really need to put the injustices with this screening in the spotlight.Every educated voice helps to inform and inches us closer to change. (including educated on this subject)Amanda
Someone said the unreliability of this test has convinced women they've all had this cancer or were saved...that is true!When pressure was applied to lower the screening age in England to 20 after Jade Goody's death...lots of women came out and said I had my first test at 20 in Scotland and they found CIN 11 and I needed a conization. THAT was the very reason they didn't want to screen young women. Huge numbers of smears in young women are seriously abnormal...but that has nothing to do with cancer. Raising the screening age protects young women from these treatments.This is well known by doctors, it's been common knowledge for a long time now. These women are passionate supporters of testing because they firmly believe they'd be dead if not for the test.This is a big problem because these women emotionally advocate smears for young women, even teenagers.I saw it in my own friends. Several Scottish friends had very abnormal smears (which made no sense looking at their sexual histories...one partner, both virgins and always used condoms)and had laser treatment or cone biopsies. The English friends lived happy smear-free lives. My Dutch friends have even longer happy smear-free lives. But when the smears start, the treatment starts...it doesn't surprise me at all that annual smears cause even more treatment. My Scottish friend insists on annual smears and she's had another abnormal smear.I look around and scratch my head. What is this all about? Treatment for the sake of it, it's certainly not about this cancer that affects 11,000 women. (taken from the doctor's article)I was reading that melanoma affects 52,000 people every year and takes 8000 lives. It's actually the leading cause of death in women between the ages of 25 and 30. It will affect 1 in 65 people.Our fear meters really are skewed...I don't think people fear melanoma anywhere near as much as they fear cervical cancer.It's such a breath of fresh air to find a group of people able to stand back and look at the evidence with an open mind. You're a unique bunch of people.Thank you for a great meeting place, Dr.Kathy P
I've had a mole on my arm for 20 years that has looked the same since it appeared when I was 6. My doctor has never made an issue of it and even told me it's nothing to worry about. But cervical cancer has always been a huge issue for no reason. I don't get it, my mole which kind of looks suspicious is no big deal but OMG I NEEDS PAPS JUST TO BE SURE! I don't get it. You can't protect yourself from everything; I could walk in the streets and be run over by a truck. What am I suppose to do? Where bubble wrap 24/7?
You'll find some interesting information relative to this discussion in an article by Jerome Groopman, "Health Care: Who Knows 'Best'" in the Feb. 11, 2010 issue of The New York Review of Books. Here's the link:http://www.nybooks.com/articles/23590MER
Kathy again,I forgot to mention that I don't screen. I don't feel I can tell people that, I gloss over the topic. It comes up a lot because women stress about and hate the test and the aftermath with an abnormal smear is nothing short of an ordeal. I've shouted a few drinks in an attempt to comfort and calm.Funny, I don't fear cancer, I fear screening. In my mind, women live a happy smear-free life or a miserable life after screening. I honestly don't believe any of my friends were destined to get cervical cancer. I've now read some of these articles and really can't believe we do this to women, hunting for a VERY small number of women. This really is criminal...it takes away so much of the "happy" person. Indignity, anxiety, humiliation, pain, fear...all the things that have been mentioned by other posters.I don't think it's fair to take away a large chunk of contentment from women's lives to cover such a small risk...unless everyone understands the deal that's being offered. I KNOW that's not the case at the moment.I'm confident in my health, would be low risk, and would hate being put through something like a biopsy when the risk of a real problem is very small. I don't know how we educate women to understand all these abnormal smears are about the test, and not cancer. I saw a post from a 23 year old Scottish medical student on another forum. She said if Scotland had a screening age of 25, she'd be dead. Her first test at 20 came back with CIN 111 and she had a cone biopsy.Even a medical student doesn't understand, that is the very reason our doctors don't test women under 25...young women WILL produce these very abnormal results, BUT it has nothing to do with cancer. Screening means cone biopsies for very young women at no real risk of this cancer.If a med student doesn't understand that, what hope do we have of educating other women?I'm not going to screen and will remove myself from the registry. I'm also determined to put this cancer out of my mind. It was never in our minds before screening, now with screening, it's never out of women's minds.Even that is bad for your peace of mind and health.With all I now know, I can't do it...it doesn't make sense to me.You'd think that would be my right with something like cancer screening, but I feel like I'm wagging school or having a sickie from work....in other words, doing the wrong thing. I probably won't tell anyone my decision and that feels wrong. How will we ever change things if we're afraid to tell others the test doesn't satisfy our risk v benefit test? (I love that - risk v benefit!)Thanks everyone for helping me work through this worrying subject and "informing" me. Every woman should be able to make an informed decision, at the moment, it's a rarity.
MER, that was a very interesting article of Dr. Groopman. He seems to present a consistent and practical philosophy along with an excellent understanding of American politics. The article is very lengthy. His comments concerning breast and cervical cancer screening are worth reading. They start about midway through the article. I think he gets it right. The new recommendations for mammography screening are debatable and clearly should not be binding on physicians or their patients. But the new guidelines on cervical cancer are clearly a move in the right direction by any reasonable standard.
The academic back and forth is interesting...what a shame no one thought to include women in the discussion?In fact, most women don't have a say in screening...yes or no or how often...Screening is mandatory and you're either forced to have it in return for Pills or subjected to extreme pressure. Our local surgery won't accept women as patients unless they have paps.All of this talk about "chatting to your Dr" and weighing up the evidence is a joke and everyone in medicine knows it...we certainly do!I feel like a powerless collection of organs and limbs.I've had bad asthma this week but won't go to the Dr...I don't feel like talking about paps. Doctors have no interest in asthma, dermatitis, the flu or sprains. They all just represent opportunities to get women to screen. It really is sickening.
I have the same problem with being harassed about having these exams. I'm going trough problems concerning bronchitis (4 times in 6 months!) and I can't find a doctor who won't bring up the subject of paps. I also have some stomach issues which has nothing to do with anything below the equator and they keep insisting I get a pelvic exam. Since when has celiacs disease had anything to do with reproductive organs? They don't care about what's really wrong with you.
The Pill was supposed to be a bonus for women. We could control our fertility...except WE lost control of our bodies. The barriers that surround the Pill mean the trade-off is mandatory testing and exams.The Pill ended up being a major step backwards for women and it happened at about the same time as screening. All of a sudden, doctors had license to require or pressure you to have a very invasive exam.I've never used the Pill because I could see what was happening and didn't want to fall under the umbrella of medical control and power.We hear about the freedom the Pill has given women. I can't see it...we were often expected to have sex because it was safe..."aren't you on the Pill"...which I never accepted, some men saw it as the end of the condom and women could take the whole responsibility for contraception...so STD's increased...BUT to get the Pill you had to give up your body to a Dr. I know women who've taken the Pill for 20 years and endured exams, tests, biopsies, infections & side-effects...their partners would never use condoms because it reduces their pleasure. The selfishness is staggering.I've always felt uncomfortable with the power the Pill and this screening has given doctors over our rights and pelvic region. (and usually they throw in a useless breast exam as well)We've happily used either condoms or natural family planning (fertility awareness) for 25 years!A friend lives in a country where women can buy the Pill at the pharmacist. Their rates of cancer are no higher than ours, in fact, I think they're lower. The Pills come with a reminder about safe sex and the importance of condoms with a new partner.That is a healthier system in every way.
http://www.westsussex.nhs.uk/news-and-events/pr-january-2010/women-urged-to-attend-cervical-screening-dates/This is the stuff that annoys me."Clare" was saved by the test and can't understand why women don't have smears.Of course, they didn't bother to mention the thousands of women who endured the biopsy procedure for nothing. False positives and needless suffering and anxiety is never mentioned.We hear about the ONE woman saved, never about the huge numbers negatively affected.It is SO dishonest.How do we know Clare needed the treatment anyway?Almost all abnormal cells return to normal or don't progress anyway.It infuriates me that these one-sided messages are still used against women and as usual, not one word about informed consent!Sorry, thanks for the venting space.
Interesting discussion by a Dr. on the KevinMD blog about how too much emphasis on "awareness" can have negative effects. While it does not address pap tests and cervical cancer specifically,it does bring up some good points that could be applied to that subject as well.http://www.kevinmd.com/blog/2010/02/overly-aggressive-cancer-awareness-backfire.html#more-42457
Why is it that even Planned Parenthood screens and wants it mandatory???? They let you get the Pill once, but more than one time without that dreadful test and you´re out oof luck.... Sounds making friends with the political lobby and the medical establisshment matter to them most than the wellbeing and the happiness of their patients...
Not all PP's have HOPE, some only allow you to "delay" the exam for up to a year. Make sure the PP you attend actually offers HOPE or ask for a referral to one of their clinics that offers the scheme.I've had no trouble really, I'm pressured, but if you stand firm they have to honor their ad or it amounts to entrapment. Not giving in is the key otherwise HOPE ends up being like everything else.
The cervical damage caused by conizations leads to many premature deliveries - 1 in 10 pre-term babies will suffer from major and permanent disability.The women in this category also have more difficult pregnancies and deliveries, often c-sections.I do wonder whether the consequences of treating women to cover a very small and unlikely risk justifies the damage it does and the problems it causes.This issue is common knowledge in the obstetrics world.Scar tissue on the cervix is extremely common and when you look at the risk of this cancer in an unscreened population, I find it hard to understand...Great reading here...Mia
I like this Dr...she's the English equivalent of your Dr Sherman...the voice of common sense and fairness.Dr Margaret McCartney...I've linked one of her articles, but there are a few more that deal with screening.We need a hall of fame and a hall of shame for our doctors!The Marie Stopes Group are a problem...they seem to produce very emotive statements with no real understanding of the clinical evidence. I think groups like that do women no favours at all, they mislead, scare and confuse.NOT helpful....T. Malkinhttp://blogs.ft.com/healthblog/2009/07/29/health-and-cervical-screening-emotion-vs-evidence/#comments
I like Margaret McCartney as well, but I disagreed with her once. There is a box on the bottom of the hospital admission form that permits a patient to tick if they have a preference for a male or female doctor. It was a fight to get that box on the form.Margaret thought it should go...She was happy with her male obgyns - fair enough, but I think that is irrelevant.Many people feel very uncomfortable with the opposite sex for some exams. It's difficult to pick and choose what the Dr does...so if you don't want a male or female doctor or nurse for intimate things, it's best to go with a male or female.Some people have sexual assault in their history and might even avoid hospital care if they couldn't be sure a male or female would be caring for them.The courts have said this sort of discrimination is an exception to the laws covering the area.I don't see race or age coming into it...because neither of those things are exceptions under the law.Some people don't want to discuss their preference and some haven't dealt with the assault themselves...if these people can tick a preference,it's easier.This goes both ways - men and women are victims of sexual assault. A friend was sexually assaulted as a schoolboy by a teacher and prefers a female doctor -he doesn't want to go into his reasons with everyone.I wanted to respond to her comments, but there was no provision for comments.Usually she is very compassionate and sensitive, so her comments surprised me.I know I'd prefer the third best obgyn,if that meant a female...rather then the best,if that meant a male.I would always say female because it's not practical to accept a male if there is any possibility an intimate exam might be necessary..chopping and changing would be stressful and more disruptive for the hospital.http://www.guardian.co.uk/lifeandstyle/2005/may/03/healthandwellbeing.health1
Here's an article about the over selling of the two cervical cancer vaccines. We've mentioned this before, but this article states that one of the researchers on these vaccines stated originally that they will not prevent cervical cancer! Don't know how true that is. I thought it would reduce the incidence 50-75%.
....there's a certain strand of political and sociocultural thought in the UK which might be best described as "Daily Mail-ism" (after the tabloid newspaper which usually espouses it), of an anti-science, knee-jerk, narrow-minded hysteria. A quick glance at the website really does suggest to me a severe case of DM-ism. There has been quite strong opposition from DM-ers to the cervical cancer vaccine, as it is considered that it will 'encourage promiscuity' in young women (because of course dying of cancer is the only right and appropriate punishment for a woman who chooses to have sex!). The fact that the interview with the Researcher was in the Sunday Express (another tabloid) should give you an idea of scientific accuracy you can expect from this.I'd suggest gaining corroboration of the allegations made by this website from a more reliable source. :-)
This is a great article where Dr McCartney addresses the total lack of respect for a woman's right to make a choice about screening.She also says she has chosen not to have smears. Amazingly brave for a Dr to admit that...I don't agree with getting rid of the box for gender preference either....I'll forgive her that one...I do think this Dr is doing lots to help women though...all patients really, she's also been outspoken about PSA testing.These doctors are brave people...as there numbers swell, it will help women deal with the screening bullies.I'm really enjoying reading through this forum.T. Malkinhttp://blogs.ft.com/healthblog/2010/01/11/suffragettes-and-screening/#comments
I've just read through the article of Dr. Margaret McCartney about gender preferences in healthcare. Yes, she is off base in my opinion. It would be ideal if everyone based their preferences for physicians on questions of competence. But that's not the real world. This blog fully documents that roughly half of patients have preferences for intimate care. The actual numbers vary as to age of the patient and many other variables. See the gender preferences in healthcare thread for more details.Dr McCartney is very sure of her own feelings, but seems to have no understanding of the many differing preferences that patients have. I fully believe that all patients should be asked about gender preferences and be accommodated whenever possible, no questions asked.
Taken from www.inspire.com"I am Jenna, and I just had my first LEEP procedure done 6 days ago. I did not even know that there was any type of alternative treatment. I was first diagnosed with CIN 1 when I was 21, and since then, every 6 months like clock work I have had a colposcopy - I have had 6. They have gotten progressively worse, and added more and more biopsy sites every time. I got the HPV vaccine, Giardasil, and my colposcopy one year ago came back showing that one of the biopsy sites had gone away completely, and that the others had regressed back to CIN 1. This last one showed a new site and one of them was CIN 2 again. I have been trying to actively avoid getting the LEEP procedure because I was concerned with being my age, would I ever be able to have children? How many times will I have to get this done? All of these questions running through my head and no answer. My husband came with me to one of the appointments and he was all for the LEEP. I still felt uneasy, but when one year later it looked like a new site had developed and I had CIN 2 again, I decided to stop playing around with this and get rid of it. I realized that it could come back, but I was hoping that after 2 years of biopsies, that maybe this will end it. The doctor told me that in women my age, he is very careful to take only the minimum cervical tissue possible. He was also very considerate of my opinion, and did not try to back me into any corners, for which I am thankful for. I am just a little confused and scared about being my age and what all goew with this. I requested to be tested for HPV - and it came back that I had the high cervical cancer strain. I must have gotten it from my husband - he was the only person I have ever been with. All I have ever wanted was to have a family - but I want to wait until I'm ready to have kids, and I am scared that this could come back and my time is limited."This sort of story breaks my heart...she wouldn't even be tested in many countries. The damage to young women is well known...very abnormal results, lots of them, that have nothing to do with cancer. It's the test picking up normal changes.Can you imagine what all this does to the mind as well as the body?This is one of the saddest aspects of this testing.These young women are often big fans of the test genuinely believing they had a life-threatening problem.This story is only one of thousands of similar stories and many are much worse.
Referring to Dr Raffle's article, Vivianne said on Feb 8th:Dr, you say Dr's may not know all of this, but shouldn't they be expected to know? When so many women are worried and treated for nothing. To think women are driven into testing like sheep being run through sheep dip...many are investigated...all for 10 women in 10,000 over 20 years!No you cannot really expect general practitioners to know about Dr Raffle's work. They know what they are taught, ie all women should have Pap smears. They're not going to research the topic. These facts need to come out of the closet and be widely presented.
It ruins your life as well...my late teens and 20's were wrecked by this test and what followed.The bottom of your world drops away when you face these medical things. Being exposed is awful...feeling helpless and scared and it was really painful, during and after. I got a bad depression and was in hospital for a month. It was worry about cancer 24/7 and having to face even more medical stuff. It was recurring CIN 1. When you're young, you don't have the maturity to cope with these things. It would have been easier with female doctors...I ended up with males for some things and that was a million times worse. I felt afraid the whole time and never involved or in control of what was happening to me.I moved to Brisbane last year (at 28) and haven't been able to go for more checks. I don't want to start it up all over again and lose my 30's. I've been on the net for a month looking for answers...I wanted to know...what risk do I take turning my back on this testing? You'd think that would be an easy question to answer...it's almost impossible without this site and Violet to Blue.I spent a week reading through this blog. It was like finding a rare diamond. I was excited and relieved at the same time. You'll never know what it meant to me to find this site.I feel calmer and also upset. If I lived in Holland, Finland or England I would not have lost my late teens and 20's.I'm not going to give up my 30's in the same way.I have to say again...this blog and Violet to Blue are important. They were the only helpful sites I found...almost all sites are one-sided in favor of testing. This is one site that tells both sides...the positives and the negatives. Why is that the case? Why don't other sites give us the negatives? It's more than that...they don't tell us that few women get cancer or that most of the medical referrals are unnecessary. It is hard to work out why no one else thinks we need that information or should have that information.If I had this blog at 17, I would have refused the test. I may have refused the test my whole life. We can't defend ourselves at 17 or at any age because we don't have this information. We only hear the positives of testing...and no one says those positives only apply to a few women. I wish I had that time over again without this testing and the procedures.I feel bitter...I'm also elated to have all this information. Thank you from the bottom of my heart.
So many of these personal stories are heartbreaking. Women who have been subjected to Pap smears at a young age seem to follow one of two courses depending on whether their smears reverted to normal or not. I don't know the statistics but the majority of women seem to revert to normal in a year or so. Many of these women assume they have been saved from getting cervical cancer when in fact they were in no danger of ever coming down with it. The really unfortunate women have not reverted to normal, but still stay at low risk, at least for many years. They are the ones who have been subjected to numerous unnecessary procedures when it's likely that only long term follow up is needed for the young.Glad so many women seem to find this blog valuable, but it's only valuable because so many of you have contributed your stories and provided important references.
....glad to be of assistance Anon. Keep those great links coming, ladies!
....an additional bit to Anon in Brisbane (sorry, this morning's post was done in a rush on my way out to work). As you've had repeated occurences of abnormal cells in the past, I would suggest sourcing a good, sympathetic Gynae and having one last discussion (not necessarily a test) before walking away from testing. You can take along info from my site and Dr Sherman's for back-up so s/he knows you have read around the subject, but I think it's worth getting an informed medical opinion from someone who ultimately has expertise in that area. You don't have to abide by their opinion if you don't agree with it. My aim with V2B has been to provide women with information round the subject, and hopefully the confidence that they are entitled to a say over their own healthcare, but I would hate someone who might actually be at risk from developing this illness to walk away from testing based SOLELY on my website. Either way, whatever your decision, enjoy Australia!
I second V2B's comments Anon.I am not an expert in this field and would make no clinical recommendation, but I would not recommend you ignore it either. By all means find the most sympathetic gyn you can and bring all the information you can.But if your abnormalities haven't resolved they could progress and result in the eventual development of a malignancy.That is what happened to Jade Goody.
Thanks Dr and Violet, but CIN 1 is not even treated here. It's so common they'd be treating every second woman. You'll know about the plentiful research that shows smears don't work in young women. The abnormal smears are not about cancer. I shouldn't have been tested or treated at all...even CIN 2 & 3 are common in women in their 20's. They know from back data that cancer is rare in young women. Testing women under 25 and even 30 doesn't work. As it is, it only helps a very small number after 30.I've looked at risk factors and feel happy with my decision. For the first time the roller-coaster has stopped and I've made an "informed decision".The problem with testing young women and finding continuing "abnormalities" is that you can't stop then and end up putting large numbers of young women through hell. That's why we shouldn't be tested in the first place and older women shouldn't test until they are "informed".As it is, no doctor would recommend stopping the test because of liability, I'm the only way who can look at this with my welfare in mind.I've looked at the risk, my personal risk, the accuracy of the test and I'm happy... The tests and treatment to date have not helped me but have damaged me in lots of ways. Not starting this testing means not getting into this position. High risk and other women should make their own decision.I think Jade Goody would have been high risk. I'm not high risk for this cancer. One sexual partner, always used condoms...he had one prior 6 year relationship with a woman who was a virgin and they used condoms every time as their only method of birth control. This CIN 1 business started when I was a virgin, had never been sexually active, not even kissed. Another reason I should not have been tested and would not have been tested here.If I'd known the facts before testing, I would NEVER have tested. My story shows what can happen when you allow testing in a state of complete ignorance.Most women are ignorant and we're guided by doctors who give us the wrong advice. I'm only getting honest answers now because I know what questions to ask and answers to query.No one is to blame for anything that happens to me because I've made an informed decision, something I should have been able to do at 17.
Anon, I agree with nearly everything you've said. As I understand it, the short term risk from CIN1 is vanishingly small, especially in a young person if that is the only change you've had. Only you can judge your personal risk; that's what my article was about. I haven't seen all the details, but I believe Jade Goody ignored a CIN3 reading.You're right, no physician would recommend you stop all testing and liability concerns do figure into the recommendation. I do not have a recommendation for when you should get tested again. Not even sure hard data is available.But certainly if you're CIN1 you should not be stressing about it.I think everyone here respects your right to make your own decision, whether it's best medical practice or not.
Anon, my story might help you and others.At 20 my Dr pressured me into a smear that came back very abnormal. I was immediately referred for a colposcopy and a cone biopsy was recommended.I was deeply shocked as I was a virgin. I told my doctor and the specialist and they both obviously thought I was lying.I was not sexually active and had never been active...nothing.I checked the risk factors for this cancer and couldn't understand what was happening. The doctors didn't care about common sense, the test result was all that mattered to them. I can understand that...I decided to stay away and do some further research.I had a second smear 6 months later that came back normal. I knew then that this testing was dangerous, that I was playing with fire and my health was at risk.I've refused all testing ever since...17 years now.If a test can be seriously abnormal and normal 6 months later...there is something very wrong.The latter result fit with my history.If I had gone along with the doctors, I'd be a cone biopsy survivor. My sister is a midwife and tells me it's alarming how many women come in with problems because of cone biopsies. If they can get pregnant and that's "if" with scar tissue, they may need sutures in the cervix to prevent it opening during the pregnancy, they may need months of bed rest, frequent checking and scans, usually a cesarean section and many have early babies. Some of these babies really struggle and about 10% are left with severe disability. Now it's impossible that all of these cone biopsies were necessary. The test itself is the problem for most women, not cancer.Sometimes we have to walk away from this testing, to preserve our health, so common sense prevails, for our quality of life, or to do our own research.I understand why women with abnormal smears sometimes ignore test results and call backs. Inappropriate testing makes that problem worse and when women don't feel like they agreed to the testing in the first place or really understand what's going on...it's hardly surprising.If I had been high risk, I probably would have had the cone.I firmly believe women make the best decisions when they have all the information.We don't get that at the moment.This forum should be essential reading for all women and their partners.
I may be able to shed some light on why women don't respond to call backs for abnormal results.We have nurses trained to do smears in the UK. Many women have this embarrassing test because they see a female nurse.However, if you need to see a specialist or attend the hospital you're much more likely to see a male doctor.My niece was tested at 17.Her mother was furious as testing shouldn't start until you're 25 but some doctors still test underage women and girls.My niece got a CIN 3 result and was sent to the women's clinic at the hospital. There was no promise of a female doctor for her appointment and they couldn't say whether male students might be sitting in on her exam. The upshot is my niece did not attend and nothing has happened 9 months later except urgent letters from her GP, who caused all these problems in the first place. It is very poor putting a young girl in this position. The test should not have been done. My sister has made a complaint against the GP. My sister called the screening body and was told young women are not tested as their results are usually wrong and that cancer in women under 25 is too rare to worry about...and at 17 almost impossible. They couldn't offer any advice about the CIN 3 result and what should be done but said women under 25 should not be screened.Great! That has already happened!Now they are terribly worried.Going through a drastic procedure for CIN 3 at a tender age is a concern. My niece was assaulted (touched and grabbed) by an older man and has had other frightening experiences with men. She will not agree to this sort of exam or treatment with males anywhere near the room. My sister is worried about the damage this treatment might cause to her daughter. The chance a girl her age could have cancer is "almost impossible" but do you leave this result hanging?I have no idea what they plan to do but my sister has said there will be no more testing until she's 25 and then really it will be for her to decide as an adult.My niece is sexually active, her boyfriend goes to the same school. He is her first boyfriend and they have been dating for a year.Anyway, the dilemma this testing can cause and a reason why women ignore abnormal results. If all women had female staff for these embarrassing procedures, fewer women would fail to attend.Testing outside recommendations needs to be sorted out as well, it creates real problems for the patient and her family. These doctors may also put women at high risk of this cancer off for life after going through an outpatient procedure in their teens or 20's.Sandy
I agree with Sandy on her last point. I have a friend who was diagnosed with stage IV ovarian cancer several years ago. She told me that she did not immediately get medical attention when she felt like something was wrong, and part of the reason for that was because she was over-treated after an abnormal pap smear years before, and she lost a lot of her trust in doctors. Fortunately she's been in remission for many years and is doing great. All this over-testing and over-treatment and our lack of informed consent is harmful in so many countless ways.
Given that she registered as CIN3, it might be worth getting her re-smeared if she's willing - if the GP surgery won't cooperate, there are private clinics, BUPA etc who will do it (£70 I think a London clinic was doing it for) - and as you're paying you will be able to specify gender of tester. Chances are at her age it will come back as having regressed back to normal, at which point she can forget all about it until she is 25, when she is better placed to make an informed decision for herself. If she comes back again as CIN3 then at least you know she might be one of the incredibly rare people that have problems at that age, and can make a decision accordingly.And can I just say her GP is an idiot, and you should absolutely be reporting him for this, left, right and centre (or failing that, give him the link to this blog! :-) )
CIN 2 and 3 is common in teenagers and women in their early 20's. Once these women were managed aggressively. We now know these smears are reflecting natural changes in the woman's body or HPV infection. In the latter case almost all clear within 2 years thanks to the bodies immune system.We don't test these women because screening is not effective in this age group. You end up referring 1 in 3 or 4 women for abnormalities when 1 in a million might go on to cancer.That one case is usually an adenocarcinoma and the smear has a bad track record for picking up these cancers. The one in a million with a real problem is likely to produce a normal smear.It's preferable to exclude these women and advise them to see a Dr if they develop any symptoms.This girl could be offered a self-test kit if she didn't want to have another smear, but the conditions (probably perfectly normal for her age group) that produced the CIN 3 reading will probably remain for a few years. It's likely retesting now would also produce a CIN 3 reading. This is most unlikely to mean a pre-cancerous condition...one in a million chance it could be a real problem. Given she has only been sexually active for a short time, it's even less likely to be a serious problem. Even infection with a high grade HPV a year ago would take a few years to progress to CIN 3. It usually takes 6-10 years. If this girl were sexually active at 12, I'd be more concerned, but still she wouldn't be tested in the UK.Of course, this is the very thing the guidelines are designed to avoid...putting a young girl through colposcopy and biopsy is a serious matter. Ultimately, only the girl and her parents can make that decision and possibly a new Dr!The indiscriminate testing of girls and women does need to be stopped, it creates needless worry and exposes young women to harmful and traumatic procedures.(Studied public health as an elective subject at Uni)Kim
Thanks Kim. Good information.Young women have been subjected to the worst abuses in cervical cancer screening. The problem has been known for some years but it has only been fully acknowledged recently in many countries including the US. I fear many young women are still getting tested needlessly.Women need to be aware of this.
That happens every day in many countries...doctors continue to pressure young girls to screen knowing it doesn't work and carries very high risks.I can't understand how they get away with doing that and without informed consent.This is common in Australia and the States. Even though the guidelines in the States have changed, lots of doctors will stick with annual testing and force women who want BC into early and annual screening.At least, the changed guidelines will alert women and some may choose to start later or even take a closer look at this testing. (those that don't need BC anyway)I hoped the coercion would stop now, but I see many US doctors will continue to refuse BC to girls and women who won't agree to annual screening. (and regardless of age)It's very hard to understand how that can possibly be okay...forcing these women into a position of harm with no or limited benefit.HOPE varies a lot too, some PP surgeries offer HOPE, others offer it initially and then ramp up the pressure, others permit you to "delay" the exam and test, and others pressure you from the first visit...sort of get you in there and then huge pressure.You need to call ahead and find out what is being offered...my friend got a shock when she went to her appointment and found herself in front of the pap smear and pelvic exam police. She left and they are back using condoms.Just be careful with HOPE...it seems attitudes vary surgery to surgery. (and Dr to Dr)
I went to PP to get information on counseling services; nothing to do with paps, pelvic, or BCP. I saw the sign for HOPE and asked if they really gave out BCP without an exam. A nurse said they didn't require it and didn't put pressure on women to get one for BCP. Later on I met with the Nurse Practitioner and I slipped and said I wouldn't get paps. She then told me, out of the blue, that since she knew I would refuse screening she wouldn't give me BCP. I didn't even ask her for or about them. Then the rant about why I needed one so desperately came on. I said some choice words and left.With PP you have to be careful; some people there are fine with HOPE and others are not. I personally wouldn't use HOPE just because, like a box of chocolates, you never know what you're going to get.
Most nurse practitioners have no idea what they're talking about, they've been trained that paps are the most important thing on the planet and refusing one means certain death for the woman. I found a NP with an open mind, she doesn't agree with the uniform pressure placed on women. She recommends them for sexually "active" girls (multiple partners) & girls who come in with STD's. She doesn't think they are as important for other women, women in long standing monogamous relationships with a history of normal paps, when women have insisted that a condom be used every time and first time lovers who stick together. She doesn't assume all men are unfaithful either...she felt I was in a better position to make that assessment. She admitted to me that some of her colleagues did not agree with giving women a choice about the exam. If they could use BC to force them, it was for their own good anyway, was their attitude. She has never refused a woman BC because she says that causes bigger problems and that BC and cancer screening are unrelated things anyway.I only see this NP because I know my choice will be respected.Don't let a NP or Dr force you to have any exam, if we allow them to undermine HOPE, we're back to square one and condoms.
It's awful being on the receiving end of one of those rants. My face burned red for about an hour after a session with a Dr about 5 year ago.I've been too scared to raise birth control with another doctor and feel really uncomfortable seeing doctors because they always mention paps.I've never experienced anything as dramatic as the reaction from that Dr over my decision not to have paps. It was an extreme reaction which left me shaking. I've never been spoken to like that before or since. I don't understand how doctors think they have the right to speak to us like that...and about a cancer screening test.My closest friend had a conization last year which turned out to be normal. I would hate to risk having that sort of thing. I don't like the idea of screening anyway...going looking for trouble. There seem to be problems with all screening tests. I prefer to concentrate on symptoms. My family tend to develop hypertension and have strokes in their 70's. I think those checks are likely to be more helpful.Condoms work fine for us and spare me from the drama. I WILL find a Dr later in life to check my heart and blood pressure. I'll never depend on a Dr for BC though, that puts you in a position where you can be exploited and controlled. I can stand up to a Dr when I'm there for heart health. I'll just request that we stick to the subject.
That's what's always puzzled me about screening, the bad attitude. Because I have to say, apart from issues I've experienced with screening, I've generally found medical staff to be polite and professional, and that includes the several occasions when I've had to have a (non-gynae) physical examination. But mention smears and you risk it going all Jekyll and Hyde...
Finding out doctors get paid here to hit targets was the missing piece of the puzzle for me.I found out about 6 weeks ago reading through this blog. It all makes sense finally!It's all about money, why didn't that occur to me?It didn't make sense that smears were pushed so aggressively, while mammograms were barely mentioned. I knew breast cancer was a very common cancer.No money attached to mammograms YET...if that changes, I suppose we'll be hassled about mammograms at every visit.Prostate screening too, no pressure...why? No money, no targets.It was also a revelation reading that 80% of women MUST screen or the program fails. Using an inaccurate test that causes needless interventions is very unethical, AND when no one mentions that to the poor 80% of women!Thanks guys for filling in the gaps. Makes me feel a lot better.Now when a Dr fires a threat over my bow, I can return fire!
I suspect this test did enormous harm in the early days of the program. It was thought that an abnormal smear would always become cancer in time. The doctors realized over the years all these abnormal smears could not possibly mean cancer. No one told us women though. Everyone knew someone who got an abnormal smear. It seemed like a public health crisis.The test is only now being changed, that has been very slow to happen.Even now some countries still test virgins, women with no cervix and others knowing these groups don't need screening and might be harmed. Also, many women are not at risk of this cancer. Yet few women are in a position to protect themselves from these programs. Even if you avoid it during consults, they manage to screen many women when they're expecting, need contraception or need to have a gyn exam.I know in the early days, some women had hysterectomies after abnormal paps. I'm convinced in many cases, the operation was unnecessary. As this forum shows, many young women produce very abnormal smears. My cousin was a virgin and only 20 when she was tested by her Dr. She had no idea what it was for and was told all women needed it to be healthy. It was panic stations when we heard she was in hospital having a hysterectomy. We were told she had pre-cancerous cells that would become cancer if they were left. We all thought she had a lucky escape and everyone started to really fear this cancer that could strike down a 20 year old girl.It was only later when the link with sexual activity came out, that her story sounded strange. I avoided the test deciding it was better to bury my head in the sand. Of course, my cousin couldn't have children. (she has never married either, I think not being able to have children would have been an impediment back then)Were those hysterectomies really necessary? Fancy putting out a test before it was proven to be reliable.These facts will become public knowledge at some stage and I'm sure these women will wonder the same thing.I don't think any man or woman should be placed under any sort of pressure to have cancer screening tests. Risk is always present in every test and procedure. Giving doctors money to screen as many women as possible surely makes the government part of this conspiracy and equally liable for the harm caused to women, past and present.It seems doctors and the government have banded together to keep the true facts from women and make maximum coverage the aim. If you are less than honest with women, this is accepting risk FOR women. Isn't that right?Most women have no idea what this testing is about and that is a crime in itself. Doctors are using the trust their patients have in them, risking their health and making money out of the test. Why aren't doctors expected to be more transparent and provide patients with the pros and cons? Shouldn't they also be required to disclose the payments they receive from the government?This is very disappointing and upsetting.I'm glad I know these things though...very glad.Heather
I think the Australian Government is going into damage control. Few women realize what has been going on here. Our women are over-screened and screened from 18 (if sexually active) and this ends up sending 77% of women for colposcopy. Laura Koutsky's report has been cited earlier in this thread.The harm being done can no longer be ignored and the risks have been well known to the profession and the government for many years.The Q is, how to find a way of reducing the damage without alerting women and facing lots of legal action?I saw this in the paper...http://www.theage.com.au/lifestyle/wellbeing/new-research-may-change-pap-smear-practices-20100119-mj3s.htmlThis will probably be used to cover some backs and to say the changes have resulted from this "new" research.In fact the changes are occurring because it's too dangerous to sit on their hands any longer. The UK have publicly voiced their concerns about testing before 25 and more often than 3 or 5 yearly. Now the States have made changes and they led the field in excess. Australia is now a clear target of criticism for over-screening and over-treating women and with no informed consent. Very uncomfortable place to be...Me thinks more dishonesty is around the corner.Dr, great article on informed consent. I'd like to see it published in an Australian national newspaper. Tim
We've had a lot of discussion about cervical screening on this forum, but I have not noticed any discussion of women's privacy and pregnancy/childbirth. I was wondering what some of the other posters think on that subject and if there are pregnancy/childbirth-related issues about which they are concerned.I've not yet given birth to any children, but I have become aware of some things through shared experiences of friends who have been through pregnancies, as well as through reading and documentary programs.It seems that much of that natural process has become medicalized and that women who are pregnant are not given much choice about certain things. One thing that has bothered me about my friends' birth experiences and the documentaries I've seen, is how so many laboring women are required to be lying flat on their backs in bed when delivering a baby, usually with someone holding their legs back. to me seems the most unnatural, uncomfortable and vulnerable (i.e not-so-private) position. I would think the woman should be able to labor and deliver her baby in whatever position she feels most comfortable, but that does not seem to be the case.Thoughts, anyone?
Re that last comment by anonymous about childbirth. Sometimes it's difficult to determine where science and ritual split with some areas of medicine. It's the difference between best practice and habit. Perhaps it's not a bad idea for patients, when asked to do something they're not comfortable with or something that just doesn't seem right -- to ask the specific medical reasons for requesting them to do what is being asked. "Could you explain to me why this is necessary from a medical point of view?" Sometimes there are good medical reasons, and patients should heed them. Other times, habit and ritual take precedence over what is medically necessary -- habit and ritual with a focus on what's best for the comfort of the medical professionals rather than what's comfortable for the patient. Patients should't be afraid to question some of the why's, but, at the same time, they should be willing to listen to the science if there are good medical reasons. MER
As far as pregnancy is concerned, make sure you have private health insurance!Number ONE.This gives you choice of private hospital and specialist. The horror stories have all come from my friends who've given birth in public hospitals - the teaching hospitals are to be avoided unless you want a very public birth.The holding the legs back seems to be an American thing. Not surprising, your doctors also use stirrups in the consult room. Neither are used here and your doctors recommend routine gynexam, not done here either.I think pregnancy and childbirth put you in a vulnerable and exposed position, so it's important to feel comfortable with your Dr and make sure he/she knows what you want and don't want. My sister wanted a very quiet and private birth with only her female Dr and female midwife present, she got it at a private hospital. At the 20 week scan the ultrasound operator wanted to do a vaginal scan rather than abdominal for a clearer picture. She refused and spoke to her doctor who said it wasn't necessary. I agree about speaking up, refusing, getting a second opinion, leave nothing to chance.In a public hospital, you have much less control. I'd still try to stand up for myself and refuse students, public settings and unnecessary exams but you probably also need a strong birth partner who can fight them off when you can't...Avoid any facility that takes you to a delivery suite, usually very public places. You should give birth in your own private room. Curtained off sections don't offer enough privacy. I think when women feel secure in their private space they feel more relaxed and labour better.My sister also spoke to her doctor about a c-section and asked that she be prepped by females. That wasn't a problem.She gave birth naturally in a squatting position with her midwife and doctor in attendance.The beds at this private hospital move into all sorts of positions, bits can be added or removed...the bed was angled so she could squat but put her weight against the upright shortened bed. (more power to push)Planning is the best way of securing a good birth experience. BirthTrauma.com has some awful stories but all seem to come from public hospitals - they all have one thing in common - loss of control.American doctors do far too many pelvic exams during pregnancy and often other tests. Some do a pelvic at every visit. My sister and friends had one at the first visit and one during labour and one at the follow-up appointment. What is it about your doctors and pelvic exams?Anyway, challenge the Dr, that sort of exam should be kept to the bare minimum, I guess your doctors figure you should be used to them given you have them constantly throughout your lives. (poor things!)NT
Many interesting comments...Sandy, I'd be asking the boyfriend about his sexual history, chances are at that tender age, he might also be a virgin. Also, your niece saw the Dr for contraception and has been sexually active for about a year, I assume then that they were using condoms.Those points would determine what action I'd take next.I'd be very careful about referrals at this stage.If I were the mother I'd also report the Dr and then try to find a sensible Dr for a chat about what to do next. Of course, this young girl might refuse any further intrusion and who could blame her.Ultimately, it will be a matter for her, but that extra information might make you feel more comfortable with the final decision. (whatever it is)We need laws to protect women in the consult room and especially our young women. Dr's should not be allowed to test inappropriately without express informed consent. This is an area that causes great harm.Re childbirth and pregnancyI think there are many areas of concern and I think forward planning is very important.We know childbirth means exposure and there are very good reasons for many of the exams and tests that are done during pregnancy, childbirth and aftercare.My issue with screening is that it has medicalized our healthy lives, violated our right to choose & to make an informed decision. I also believe it has alienated many women from doctors and some receive no healthcare at all. That is inexcusable...we're talking about a cancer screening test that should only be offered to women.I think screening targets have caused unethical and coercive tactics and are the reason behind most inappropiate testing. (like the young girl mentioned here)We're viewed as targets by some doctors, not individuals with rights.Most women are not in a position to give informed consent when they're ambushed in the consult room. It's therefore important to inform women of their rights, the facts and to pressure the government to change or drop the payments system.This testing does help a few women, but that can never justify the damage being done to the rights, health and lives of the vast majority of women - healthy women who'd never have an issue with this cancer.It is this attitude that must be changed...that women MUST have cancer screening and any tactic used to increase coverage is a good thing or, at least, we'll turn our backs and ignore unethical conduct. The over-treatment and violation of our rights is a casualty of the total emphasis on coverage. The focus is fueled by financial and political considerations.I see lip service to informed consent in the UK, but at the surgery level, it's business as usual. The encouraging thing is more women are starting to fight back and challenging unethical conduct.It would be bad enough if we were talking about something simple, reliable and non-invasive.The invasive nature of this test, it's unreliability, the over-treatment issue and the rareness of the cancer means the current situation is totally unacceptable.I found a great article recently on the "amplification" of risk that has happened with this cancer. The combined effect of doctors, media and health groups means almost all women are misled as to the threat of this cancer. (which is helpful when coverage is the only consideration) I'll post the link.
http://her.oxfordjournals.org/cgi/content/full/18/3/318The article that talks of amplification of risk. Dr Raffle has also made the point in one of her articles that if women "think" this cancer is widespread and the test reliable, participation rates are likely to be higher.I think that's misleading women and totally unacceptable. (Dr Raffle was stating a fact, not commending the practice)This article focuses on young women and their understanding of screening.It shows women are indeed misled as to the risk of the cancer and the reliability of the test. It concludes by saying the truth about those facts may deter some from testing, but that young women produce higher numbers of abnormalities and that fact may encourage screening.I'd say that's another misleading fact.Young women produce high numbers of abnormalities, but that is largely to do with their bodies, HPV infections and the inaccuracy of the test. Cancer rates show women over 50 are more likely to get cervical cancer. (and it's still a small risk)Sure 1 or 2 in a million get cervical cancer in their early to mid 20's but very likely they'll produce false negative results anyway. A few get this cancer in their 30's and 40's but it's older women who face the most risk. As I understand it, a high grade lesion in a 55 year old is much more likely to progress to cancer, than one in a 35 year old.I don't think it's honest to mention the high number of abnormalities in young women to encourage testing. This is not a reflection of risk, but of the unreliable nature of the test.
Women should get CLEAR information about the benefits of testing. I saw this information on absolute risk of getting breast cancer with and without screening. I found it really helpful. I'm sure most women think the benefits are more than that...We should get the same clear information for cervical cancer. Forget all the hype and spin, give us three or four lines that clearly convey the facts.I know mammograms have risks as well, but when you can see the low benefit of having mammograms, you might not even need to consider the risks of the test.I have no family history of cancer and have chosen not to have mammograms.http://www.usatoday.com/news/health/2009-11-29-screening30_ST_N.htm
I see Elle McPherson, the model or ex-model, has weighed into cervical cancer awareness as an ambassador of the program. It really annoys me when celebrities start giving us medical advice. They usually have no clue what they're talking about...we get enough misinformation as it is.She opens with saying the test means she's OK and can forget about cervical cancer.Ahhh, not true, one third of women who get cervical cancer have normal smears. All women should take note of symptoms and not place all their faith in this sort of imperfect test.She then urges all women to get the test, once again, I think we're all capable of making our own decisions there. She might think it's important, but she doesn't know me and it's inappropriate to give blind advice. The risk varies between women, some women are not at risk at all...I think it's irresponsible to sponsor a celebrity to give us medical advice - it's simply a tactic to get women to screen.I think she should stick to designing lingerie.
I've found this discussion very interesting.I agree that the messages we get about screening have brainwashed us, even educated women.At dinner on Friday night a friend who'd been reading this blog mentioned the absence of informed consent with cervical screening.A mutual friend, who has a PhD, said that if women had a choice, some wouldn't screen because after all, everyone hated the test and the death rate would go up.When we talked about prostate screening she talked about risk and choice. It hit me that this woman would consider herself a feminist. When I said it was strange to hear a feminist say women should have no choice about an invasive and optional test and men should, she fudged.When I mentioned the rareness of cervical cancer and the commonness of prostate cancer - she doubted that!She also doubted that almost all the abnormal smears were false positives and the biopsies largely unnecessary. This was evidence to her that cervical cancer was common or would be without screening.Even a highly intelligent woman has picked up the messages being sent out to women and hasn't looked further and didn't really "hear" what she was saying.Men have a choice, women shouldn't have a choice.Isn't it amazing that a well thought out plan, fiddling with some statistics, omitting other facts can even manipulate the thinking of educated women and feminists to that degree? The women who are our leaders have accepted the messages and "facts" without question even though the "message" if offensive and the "facts" a major departure from the truth. Misinformation and ignorance are being used as manipulative tools against women and under the approving and accepting noses of our educated sisters. They're sure they have the facts. If these women can't see through the "messages", what hope do the rest of us have?Women sometimes get angry at this stage because they know everything about this screening. It's like questioing the existence of God to a devout Christian. It doesn't even press them to look at the testing again, they are so sure of their facts and so sure you're totally incorrect. I even got a warning about reading a blog that's critical of this amazing test! These women have accepted the very things they hate, like control, manipulation, no respect for choice or for the female body. I don't see a big difference in the treatment of women in developed and undeveloped countries or with the way we were treated historically by doctors. There is still a different standard of disclosure when it comes to women and less respect for our rights. Many women accept that when it's packaged up as being for "their own good". We have a long way to go to turn this around. These "facts" have been accepted as gospel for so long, they are almost beyond dispute.It means a few women will be open minded enough to work it out and make their own choices, while others will stick with the program and accept the messages. Intelligence won't have much to do with it. Other factors will help here like being wary or untrusting of the profession, hating the test and looking at it with an open mind, having an enquiring mind, looking for answers after a bad experience, having a rebellious nature. This may be a battle won from the ground up.Jan P
I have to say Jan P, that it was a surprise to me as a Brit that American women accept having the Pill held hostage for smears. I would have thought that American feminists would be going insane about it! But reading around major US feminist sites like Feministing, there's little mention of this kind of thing. I think there was a lot of feminist pressure to turn smear tests into a formal screening programme back in the day and its become accepted that you don't question the need for them, or how the service is run, as it would be 'anti-feminist' to do so. "I even got a warning about reading a blog that's critical of this amazing test!" This is what I truly don't get. No-one would hesitate to critically evaluate the pros and cons of testing and treatment for any other major illness, even if the treatment was potentially life-saving. It's just a screening tool, not the Holy Grail.
If the things I've read here are true, and it certainly looks that way, how can doctors highly recommend this test for all women? I mean how many women get information about false positives, the risk of having biopsies, the small risk of this cancer.I don't know any woman who got any of this information.We're told we must have this test, it's more important than anything else, it's important for any woman who has ever had sex, even once, we must have it regularly and since screening, cancer rates have dropped by 70% and with screening we could prevent 90% of cases.But when you look at the facts, those things are less significant when they're in context.It really is:My risk of cancer v the risk of false positives and having biopsies.That is never made clear to women.The risk is really low as well, most women think this cancer must be really common otherwise, why all the fuss?It confuses me because this information does challenge everything I've ever been told or read.Dr Sherman is right as well, no one has ever asked me whether I wanted the test. Few women have a choice or at least you're in for a rough time if you refuse.The fact doctors won't give you birth control unless you have screening makes many of us think this test is more or less compulsory for women.How is it that doctors get away with giving us the information they do, which isn't even close to an accurate assessment of the test?I thought we'd moved further than this with women's rights and all.
I thought this program was a great success story and stopped many thousands of women dying every year. I decided to make the program the subject of a paper for my political science essay re public expenditure and public health policy.Thank you for this forum which has an amazing array of references that are usually only available after weeks of research. It's a great help to find them all in one place.The first thing that surprised me was taken from the Australian Government's Health Policy website.In 2005 there were 734 new cases of cervical cancer and around 300 deaths. (approx. 30% of these women had false negative test results)In 1991 when the screening program was introduced there were 1092 cases. (approx 40% false negatives)The cost of the program is many millions, which is a lot of money for each life saved and some may say a poor return on that sort of money. It's likely other things are contributing to the decrease in numbers as well, like more women having had hysterectomies.I then came across the false positive test result. The Govt website does not mention false positives. The article linked from this site by Dr Laura Koutsky says 77% of women have colposcopy during their screening lives. Now that's a lot of worried women. Wouldn't you think that statistic is worth mentioning to women?The govt site has nothing on informed consent either.The mortality rate has dropped since 1991 from 4 deaths per 100,000 to 1.9 per 100,000 in 2006, therefore they claim screening has slashed death rates. Although it's hardly 90% or even 70%, closer to 50% and that's assuming screening accounts for all the reduction. (I doubt that)I'm afraid my paper praising the Govt for allocating these funds to combat an important health problem is in tatters.This isn't what I expected to find.I'm left thinking these funds would be better allocated in many other areas. This cancer is too rare and the test too unreliable for it to be a sound allocation of taxpayer funds.I also have ethical questions about the program when it causes over-detection and conceals the real story from women.I view this testing very differently now. I support your call for informed consent. I don't like what's going on at the moment. This program does not benefit women generally, in fact, it's not in the best interests of most women. It appears to benefit very small numbers to the detriment of all women, from those who dislike the test to those that end up having procedures and even surgery for false positives.I'm pleased something is being said about this testing. It's disappointing that the benefits and risks have not been honestly conveyed to us. More so that no one in this country seems the least bit concerned about the healthy population of women caught up in this program. At the very least, they should know what risks they are accepting each time they have the screening test.I'm not sexually active and have no direct experience with this test. After my extensive research, I doubt I ever will.Giselle N (Melbourne)
Thanks for the praise, Giselle.Sometimes I feel that this blog is the equivalent of a graduate seminar on women's health.The references that have been accumulated here with everyone's effort are of an extraordinarily high level. When combined with Violet to Blue, we should offer this as an online study program.
A poster on another forum posted a link to this new article about prostate cancer guidelines being revised. For those of us with concerns over gyn exams, this article is sure to ruffle some feathers. It more or less says that men are given a choice in regard to whether or not they should be tested, informed consent should be emphasized and so on. Basically all of the things we women are not afforded in regard to pap tests/gyn exams. Some quotes/excerpts from the article:"We continue to emphasize the importance of informed decision-making, and in this guideline we take it a step further," said Dr. Durado Brooks, director of prostate and colorectal cancer for the American Cancer Society. Oh really? Well, why can't the same be done for we women and the almighty pap smear? Don't we have a right to informed decision-making too? And why aren't our OBGYNs allowing for that?And this:The guidelines also came out firmly against community-based screening. "They have an emphasis on the informed decision-making and on men's values, really highlighting that this is not a right or wrong decision, that men's values really need to play a central role," Taylor said. "Putting this front and center was really a change."Dr. Anton J. Bueschen, president of the American Urological Association (AUA), said his group concurs that "informed consent - including a discussion between physician and patient about the risks and benefits of testing - is a key part of one's decision to be tested for prostate cancer. It is equally necessary that patients receive reliable information from culturally appropriate sources.My response to that is what about women's values? Shouldn't our doctors be having these same discussions with us instead of demanding or exerting pressure on us to undergo invasive, humiliating tests? Why no stand against community-based screening when it comes to pap tests?Please excuse the long post, Dr. Sherman, but I am really quite aggravated after reading this article.Here is the link to the full article: http://health.msn.com/health-topics/prostate-cancer/articlepage.aspx?cp-documentid=100255030
Yes, anon, the American Cancer Society has just downgraded their recommendations for prostate screening citing all the problems that are just as true of cervical screening but never acknowledged. The only difference perhaps is that cervical screening does lower the mortality from cervical cancer and it's not clear that prostate screening accomplishes even that. Perhaps this is too cynical, but another difference is that no physician makes their living on prostate screenings, whereas gynecology would be devastated if routine annual exams and Paps were no longer recommended.I was surprised that the ACS even said that a rectal exam should be optional for men.
Dr, do you really think it lowers the mortality rate?The numbers helped are so small anyway and other factors are present, isn't it possible all this screening achieves very little with a high cost in unnecessary and harmful investigations? Not to mention a reduced quality of life for women.One in three American women have had hysterectomies, better quality condoms, better hygiene...there are lots of things that are contributing to the decline.Personally, I think smears play a small part.If the facts were known and we were treated in the same way as men, I think this testing would be largely confined to very high risk women.Beth
Beth, I have certainly not studied the issue, but it is well accepted in medicine that it does lower the incidence of cervical cancer. You can argue how great the effect is and whether there are other factors, but I think most respected doctors in the field agree that it is an important factor.But as I suggested in my article on informed consent, I see little justification for pushing Pap smears on everyone. Given the problems with the testing and the low incidence of the disease, I believe it would make more sense to target it to higher risk women. And of course the right of all women to informed consent and to refuse the test should always be respected.
Thank you for this site and information.My name is Shirley and I have a problem with this test.My mother-in-law is 75 years old and lives in Florida. I live in Australia with my husband. We have become concerned that pap smears are getting in the way of regular health care. On a recent trip we noticed she has gone off several medications. She didn't want to talk about it but later at a girls lunch she told me the doctors pressure her to have pap smears. She has never had a problem smear and has had them every year for a lot of years now. She doesn't care about cancer anymore and wants a peaceful life. She has some pain in her hip and knee joints and the smear causes pain and bleeding. The last visit, which we think was about 6 months ago, the doctor told her off for being very late with her pap smear and saying their relationship might not be able to continue without the smear. I'm sure this is the reason she is now avoiding the doctor.Dr, what is the best course of action?Is this attitude common when a doctor is dealing with an older lady?I'm hoping we can find another doctor. My husband is furious and is thinking of relocating her to Australia where she can get medical care. No doctor here would recommend smears for someone her age.Thank you.
Shirley, print out the new guidelines for Pap smears of the American College of Ob-Gyn and have your mother in law bring them with her. The guidelines didn't exist yet 6 months ago when your mother in law was last seen. Hopefully her doctor will not push for further Pap smears after seeing that your mother in law is educated on the issue. If she has many negative prior Paps, she does not need any further by any published standards.If the the doctor still pushes for a Pap smear she should refuse and walk out. She could also file a complaint with the state medical society which might get the doctor's attention.
Isn't it incredible that these are the lengths women must go to if they choose not to have a cancer screening test?I understand feminists were responsible for this testing being put on the political agenda. I read a quote somewhere that said a feminist is someone who doesn't want someone else to think for her. Yet this testing has backfired on feminists. It has given the profession huge power over women, power which is misused every day. It's the norm. It has exposed women to risk, diminished their rights and harmed large numbers from needless anxiety, to pain, degradation, injury, mental and emotional damage. Women are outcasts if they choose to think for themselves. Once again, it's the system controlling women.Yet feminist groups are fairly quiet on what is happening to women. They empowered doctors and now all women are living with their decision. They have done to all women what they claim to hate, endorsing the system to abuse the rights and bodies of women. It makes me quite sick to see women pressured into intimate inspection and then lined up conveyer belt style to have the cervix "treated" for "pre-cancer".Instead of a very small number getting cancer, all women are "pre-cancerous" and huge numbers "treated" regardless of their level of risk or personal wishes. It is very degrading, women are stripped of dignity and privacy. I'm sure that's why these groups feel compromised rather than being outraged at what is happening around the developed world with this testing and taking steps to stop it.Very few women consent to this testing. We're either forced, pressured, scared or have been led to believe this cancer is common. Very few women currently test KNOWING the whole story. NK
Thank you Dr for your help, we'll try that. We've arranged for a friend to go with her to the doctor and give her some support. Like many women her age, she doesn't feel comfortable saying no to a doctor.Women of that generation, well, most of us really, do as we're told. The problem starts when we feel strongly about something. I wonder how many women neglect their health because of this test.My mother-in-law refused the breast and pelvic part of the exam a few years back. She doesn't want these checks any more and of course, she knows we don't have them here in Australia. (some women ask for a breast exam; my doctor does them if a woman asks but tells them they are not recommended)Strangely the Dr allowed her to pass on those checks even though breast cancer is common and has been pigheaded about the smear. It is odd that the stand is made over this test when it's the last thing that usually gets a woman. If you look back to the days before screening, this cancer wasn't a big killer of women then. I'm not sure how this paranoia with this cancer has developed.If the Dr still persists, we'll make a report, although I know my mother-in-law will be concerned about taking that step. Perhaps, the Board could recommend a more moderate Dr or gently advise the Dr that his position means an elderly lady will receive no health care. That is the reality when this sort of attitude is taken.
An update that may interest a few people, Canada has now approved the HPV vaccine for men. Don't think this has happened in the US yet. We need more details though. Would boys have to be vaccinated at the same young age as girls, before they are sexually active? If so, I don't know how likely that is to happen.
Doctor, may I ask your view of compulsory pap smears and mammograms for female soldiers?Many young women are virgins, others low risk and some women are concerned about the risks of testing, both cervical and breast. (a few more of us know about the risks after reading this blog!)Yet if we join the military, we are not entitled to make informed decisions. It is mandatory testing unless you fall into an exempt group like women who have had complete hysterectomies for non-cancerous conditions.I'm a virgin and after reading this blog and one other, I definitely don't want cervical screening until I'm at least 25. At that age, I'll review the medical research. (by coming back to this blog!)Given informed consent is a legal requirement of all cancer screening, how can military women be forced to have screening?Isn't this breaking a law or something?What action can I take?Thank you doctor.Stacey
Stacey, I doubt that I can be of much help. I'm not aware that Pap smears are required for pre-induction physicals. They certainly weren't 40 years ago when I was in the Army Reserves. On the group physical thread there is this link to army exam regulations. Pap smears are not mentioned.But if you are correct, there's not much practically you can do about it. You could write a letter to the chief army medical officer pointing out present guidelines, but it could take many years before they update them. You can of course just refuse the exam and see what happens. I have no idea what they would say. But medical officers have some discretion and I suppose could choose to skip the exam.
Women hit that barrier throughout their lives. I wanted to join a volunteer group last year that works in South East Asia. You guessed it, a pap is required for all female volunteers. I objected on the basis it should be my decision when it comes to extra exams. We went around in circles for months, doctors and medical groups are not used to the concept of cancer screening and preventative checks, women and choice.I gave up and did something else. Some girls school make paps a pre-requisite for entry from age 16, but that may have changed, a friend hit that back in 1995.Pre-employment checks often include paps and even breast and pelvic exams.If a woman doesn't want paps and other checks, she had better get used to standing her ground, have lots of patience and be prepared to pass on some things. My friend chose not to continue at that school, I passed on a great volunteer project, another friend passed on a job opportunity. I think there are a lot of women passing on all sorts of things out there to avoid this test.
Paps are even required for the army reserve.I'm not sexually active yet and wouldn't agree to one. It couldn't be waived and I decided not to join.I couldn't understand why they'd include virgins in this testing and I agree it should be the woman's choice anyway.Why don't they require colonoscopies for bowel cancer, that is probably more common than cervical cancer even in young people.Common sense doesn't seem to apply with this screening.http://www.ehow.com/list_5916596_eligibility-requirements-army-reserve.html
Possibly this reference has been given before, but here's a nice article from Australia giving the pros and cons of screening for breast and cervical cancer. It's a fairly quick read.
The American Cancer Society seem to stand in the way of excess in the States.I was reading an article recently that showed many groups were questioning the value of pelvic exams in symptomless women. They also said there was no real evidence clinical breast exams were helpful and put a line through self-examination.They talked of moderate pap smear recommendations as well, although informed consent was not mentioned or differing risk profiles.I can't find the article now but will continue to look for it.Why is the American Cancer Society behind the times, they seem to ignore sound research and make up the rules according to their agenda?I think it creates confusion and anxiety and it's unhelpful for this group to stand in the way of changes that are made to protect us from harm. They have stood firm on mammograms yearly from 40. Having looked at the evidence, I've now decided to discard this group's advice about everything. They clearly don't have our well-being in mind.Dee
The one thing that makes me uncertain about all this cancer screening is that we have little choice about it.I wouldn't mind being offered this or that and given all the information, but screening for women means we must have these tests and that is wrong with something like cancer screening. It also adds to creeping medical control in our lives. If you cut out preventative exams and tests and all the tests and surgery that it causes, you'd have fewer patients in the health system. A friend had a preventative exam, then sent for an ultrasound, then referred to a specialist, then had a healthy ovary removed and now she's having another biopsy of her breast. I'm afraid this approach to health care leaves me uncertain. It doesn't seem to achieve very much and turns you into a patient your whole life.She also has the emotional roller-coaster reaction whenever she's referred for something. She thinks that I'm lucky not to be having these diagnostic tests. Almost like I'm well and she's always unwell or her health is fragile, but we're both actually well...its just she feels like she's always unwell or her health has to be closely watched by doctors.Luck has nothing to do with it. I made up my mind years ago not to go looking for trouble and to have a little faith in my body.I'm certain my approach is healthier.Anyway, I'll drop her at the hospital as I usually do and reassure her all will be well. The last trip was for a hysterscope (??) which as usual, found nothing wrong. Isn't it odd that many of us now need this painfully achieved reassurance every year that all is well? We don't assume we're well. Gone are the days when we're well or unwell. I'd be more certain of her health if she stopped or scaled back on the preventative stuff. Many of my female friends live like this, an endless cycle of doctors appointments, tests, referrals, tears, relief only to start it all over again the following year or the year after that. If someone is actually diagnosed with something nasty one day as a result of these exams and tests, it will come as a huge shock.I prefer to go back to the days when healthy people were not in the health system.
I was sorry to hear of the passing of Dr Joan Austoker, one of the handful of people prepared to speak out for informed consent and screening. She also developed "breast awareness" and spread the word that self-examination was not an effective cancer screening tool and should not be recommended. She faced the fury of the screening lobby.She made a huge contribution to this subject.Thank you Dr Austoker.http://www.bmj.com/cgi/content/extract/319/7212/722 and:http://www.timesonline.co.uk/tol/comment/obituaries/article7026734.eceBeth
http://jms.rsmjournals.com/cgi/content/abstract/5/3/137?ijkey=e30b56f393c21a570ad73713265032f9ccb35339&keytype2=tf_ipsecshaThis essay says that showing relative risk is more likely to lead people to accept the test and benefit expressed in terms of how many must screen for each life saved is less likely to lead to screening.It is definitely the reason why cervical and breast cancer screening is always presented in relative risk terms or overall reductions. The latter approach would clearly show that screening only benefits a very small number of women. I agree that the risk of over-detection and over-investigation is unknown to most women. Those two facts would enable some women to confidently reject screening. (especially low risk)
I thought this article was strange. It basically says that now we have vaccination, women "may" consider other factors when it comes to screening like false positives.Why can't be consider the risks of testing regardless of the risk of the cancer?It's a rare cancer anyway???http://archinte.ama-assn.org/cgi/content/full/168/17/1881
When you think how invasive this test is, it's inexcusable for doctors to overuse it.One thing I've never understood, why do American doctors test girls not yet sexually active? As a teenage girl I was an exchange student and was shocked that many of my classmates were being tested every year whether they were sexually active or not. Given this cancer needs the presence of a sexually transmitted disease, the human papilloma virus, I couldn't understand it. A few girls also had abnormal paps and ended up having LEEP. In the UK my Dr told me not before 21 and only if I'm sexually active, the age was increased to 25 a few years ago.I've also read that women who've had hysterectomies and no longer have a cervix are often tested. I think it was something like 65% of American women in this category were still having annual pap smears. I know this test is not a screening test for anything other than cervical cancer.What goes through the minds of these doctors? Why would you put women through an invasive exam when they are not at risk? Isn't that an assault? How would these doctors justify their actions to their patients or a Medical Society?Surely when testing carries the risk of LEEP these doctors have to act ethically and be responsible with testing.I'm wary of this testing and feel like I just won the jackpot. I'm going to enjoy reading through this website!Franny
I have a question for my fellow U.S. posters -- have any of you ever received a "reminder" card from the OBGYN's office that you are due for an office visit? I understand from reading others' comments that women in the UK and Australia have received such notices from their Drs' offices and the screening authorities to the point of it becoming harassment. Am wondering if U.S. OBGYNs are starting to engage in that same practice.Received such a notice today and that has never happened before. It was rather upsetting to see it in my mailbox, esp. considering my last experience at said OBGYN's office was unpleasant. Long story short, I was there for a non pelvic/pap-related concern and faced an unpleasant opportunistic screening attempt and scare tactics that so many of us on here have come across.Susanne
I got a letter saying that even though pap tests were no longer recommended every year, women still need annual pelvic and breast exams. My mother and Aunts who all see the same gyn, got letters saying their gyn would not be making the change and that they still needed annual pap tests.We're totally confused and that's how I found this site. We're starting to wonder whether any of this is really necessary. To think women in Finland only have 5 tests altogether, I was up to 5 paps, a colposcopy and pinch biopsy by 20! (normal)I'm going to sit down with my mother and with open minds, read some of these research papers. These are loathsome exams and if I can safely get away with skipping them or having them every 5 years, I'll do that.Even a pap and nothing else every 5 years would be a big improvement. Most women hate these exams and test and only go through with them because we think we must for our health. If that's untrue or a matter of opinion, then I'll have the final say. My mother is interested in some of the articles here on mammograms, she hates them and can't believe squashing your breasts can be good for breast tissue and she's worried about the radiation. Her gyn told her the risk of dying from breast cancer is greatly increased without mammograms. That doesn't sound right after looking at the paper written by the Danish Medical Institute. (sorry, I've forgotten their exact name)Gail
Here's an article about a home testing kit to determine the presence of HPV. It is being tested by the Dutch as an alternative screening method for cervical cancer which should be acceptable to most women.It is still in preliminary testing I believe.
It would only be acceptable to me if it were reliable.I don't like invasive exams like most people but the unreliability of this testing sets it apart and the rareness of the cancer.When you look at other cancer screening tests, the cancers are more common even when the benefits of the testing is debatable.I know it isn't a female only issue, but does anyone know whether the benefits of routine colonoscopies are worth the risks and unpleasantness of the procedure? Is the FOT enough without a colonoscopy?My mother had bowel cancer but she was 78 when she was diagnosed. We all have to die from something.At 52 my risk is only slightly increased because my mother was older when she was diagnosed. I thought waiting until I was 60 might be good enough or even better, having a FOT every 2 years.Isn't it funny how we all feel like we should be doing something if there are screening tests for any cancer? It does seem like screening creates more fear and pressures us to "do something" rather than wait for symptoms. We should all be able to weigh up the pros and cons and not just expected to have whatever is available. My GP thinks ovarian cancer screening might be introduced due to a pressure lobby. It never ends, I've read a few times that ultrasounds for ovarian cancer are unreliable. I hope the Government stands firm until they have something reliable. Sadly, people who've lost someone to ovarian cancer think any test would have helped their relative, but that may not be true and we have to think about those that might be hurt by testing. We all know once tests are introduced, we're all expected to have them, so they shouldn't be introduced unless they pass very strict criteria. We should learn by the mistakes that have been made with other screening tests.Ruth
Ruth, the HPV DNA test is not per se a screening test for cervical cancer but for the presence of HPV, the virus that causes cervical cancer. Of the over 100 strains of HPV, only a small minority are associated with the development of cervical cancer. If you don't have one of those strains, presumably your risk of cervical cancer is very small and you can be reassured.Long term follow up with the test is still needed I'm sure.
That sounds like an improvement, hopefully the only women being further investigated will actually have the high risk type of HPV and be part of the small group at risk of this cancer. That should free up the majority of women from this testing and unnecessary treatments.I'll have to do some more reading on this test. Dr, what is your opinion of the doctor's that have said they won't be following the reduced guidelines and will still test yearly and include sexually active women of all ages and all women (even virgins) from 21?How can these doctor's possibly justify this conduct? It can't be defensive medicine when they are running against the recommendations and clinical evidence. Is the only explanation, money? Wouldn't they be exposing themselves to law suits by over-screening and over-treating women? After all, the facts are out there now and women are aware of the reasons for the changed recommendations.Ruth
Ruth, I won't try to judge or impugn the motives of physicians who still recommend annual Paps for sexually active women with prior negative Paps . I'm sure they vary. It's far simpler just to take your business elsewhere if you don't want Paps.Recommending tests for virgins to my mind makes no sense and can only be justified on the pretentious theory that women can't be trusted to tell the truth. Again, I'd just recommend you go elsewhere.
I have nothing but contempt for the doctors that use fear to keep women attending for excessive and unnecessary testing and exams. I can't even read some of the medical sites, the "advice" makes me furious. Financial gain is the sole motivator of this sort of conduct and "advice".It scares many women into testing or they push the party line that women concerned about their health won't neglect these important health checks. They usually end by saying they worry that more women will die of things that could be caught in time if they follow the changed guidelines or choose not to have certain tests or exams. These doctors are unprofessional and the medical societies should do something about it. Doctors should not be permitted to market things as important, if they are of uncertain value or when they are of no value and expose the patient to risk.The gyn's that say they'll continue to screen virgins should be cited for professional misconduct...it amounts to exposing your patient to risk and performing an intimate exam on a woman who has no chance of benefiting from it. I can't understand how they get away with it.My 18 year old niece has just refused a pap smear, thank goodness she had the backbone to refuse. This testing really worries me. I think it is used to take advantage in more ways than one.Kit
"pretentious theory that women can't be trusted to tell the truth."My dr tests everyone from 18 and told me it's highly unlikely that any woman is still a real virgin at that age, they may be a technical virgin but not a real virgin. It was also said that some women say they are virgins to "get out" of paps.I changed my dr straight away after hearing that. I thought the dr sounded like a prosecutor, prison guard or guardian, not a dr. I think some drs think women can be bossed around or told what to do with paps. I disagree with that thinking.It's our body and it should be our choice with paps. It doesn't feel that way, but at least my new dr listens and accepts what I say. There is no assumption that I'm a liar or fudging the truth. Dr's should understand their role and not step over that.I doubt many women would be brave enough to say, I'm not a virgin but don't want the test anyway. That should be possible, we're not talking about driving under the influence or without a license.I agree with Dr Sherman, change your Dr if you don't like the attitude.It will take years to get the message across that these tests and exams are OUR decisions, not theirs. It starts with us. If you accept everything, there is no problem and dr's are used to us doing that, giving in, doing as we're told, accepting the lectures and punishments. It's time to stop giving in or accepting substandard and inappropriate conduct by our dr's.By punishment I mean refusing to prescribe the birth control pill or other drugs or threatening not to treat you anymore. These things are commonplace at that moment. It means most women give in and so this conduct continues.I think this forum is a positive step.College Girl
I'm very confused and a bit scared. My Dr has been telling me at every visit since I was 13 that I'd have to start paps at 18 even if I was a virgin. I'd have to have them earlier if I had sex before 18. It was always have paps, there was no choice about it.I heard that paps are not recommended until you're 21 now but there seems to be confusion with virgins. Some sites say all women at 21, others say sexually active women at 21.Some of my friends have only had one partner and their boyfriends have only had them as a partner. No one mentions women like that, they are included in the women having sex group, but if this cancer is caused by HPV, can you catch HPV from a virgin?I told my doc that paps are not needed until you're 21 and got a shock. I was told if I wanted to risk death rather than have a simple 2 minute test then I was extremely foolish. I was told to think about it and agree to the pap at my next visit in 3 weeks time.I left the Clinic shaking and confused. What is going on?Am I risking my life if I refuse paps? I'm a virgin and 18, who do we believe when we're told not until 21 and your Dr says from 18 and every year whether you're a virgin or not.This puts us in an impossible position.I don't want the test unless I'm taking a big risk of getting cancer. I should be doing other things, not worrying about paps.Confused and Scared
Confused & Scared, I don't give individual clinical advice, but it's clear where I would stand on your question. The American College of Obstetrics and Gynecology didn't lightly raise their recommendation to 21 for the age to start Pap smears. It was done based on very conservative science. A starting age of 25 is commoner in Europe. And virgins are at a very very small risk.Please read through at least some of the references on this blog and make up your own mind. You're much too young to be scared about this issue.
They did the same thing to me when I was 18 and I refused. 8 years ago the standard was to start screening everyone at 18 no matter what (now of course it's 21). Personally I wouldn't start screening until 30 (basically Finland's guidelines). I've had a couple which were all negative and a negative HPV test, so I'm not worried. I've been in a monogamous relationship for 3 1/2 years so I'm not exposing myself to anything. But to most doctors that doesn't matter; now I refuse all screening and I will never have another one.
I was scared too and felt like you-know-what until I made myself get a pap then I'd end up feeling worse. They make you feel like everyone is going to get this cancer and that it's so common. I started feeling like that and then I stumbled on a blog about this subject. After a lot of research I made up my mind to discontinue further screening. The damage, however, has been done. I feel abused and like they were only after me for money. I'm a survivor of rape and these tests and harassment feels like the same thing.
Confused & Scared,As Dr. Sherman suggested, you need to look at some of the references given by various posters to this blog. Violet Blue has done a nice job of collecting them on a single site - don't know if he has a direct link to it on this site, but if not, perhaps Dr, Sherman could post it. Contrary to what your physician implied, the scientific evidence and statistics are clear - cervical cancer is a very uncommon cancer. In fact, if you look at the CDC statistics by cancer type, it is the least common of the 11 cancer types listed.Read the available information and make up your own mind.A couple approaches you might take with your doctor:1. Dr. X, I don't feel you've given me enough information to make an informed decision. Specifically, I would like hard statistical information on the actual risk of contracting cervical cancer, including specific risk factors, and the sensitivity and specificity of the pap test in detecting it. I would also like hard data on both the individual and cumulative risk over time of both a false positive result and the risk undergoing an unnecessary procedures as a result of a false positive result. If you can provide me with copies of this information, or point me to where I can find it, I will study the information and get back to you when I have made an informed decision regarding this test.2. Read the data, print it & take it with you.Option 1 is probably best - after all, you're taking an informed active roll in your own health care. Option 2 is more directly confrontational.Remember, you are the one in control - the physician can't perform any test or procedure without your consent. Don't let them coerce you into something you don't want.FYI, you also might want to research the data on pelvic exams - there's a lot of evidence indicating they are of little or no value with an asymptomatic patient.Hope this helps you!
29 year old virgin here and over being pressured to have pap tests and tired of explaining my weird position. One doctor even asked me if I was gay because lesbians need smears as well if they've ever had sex with a man. I've also been asked many times exactly what sort of sexual action I've seen, the real v technical virgin distinction. It is offensive to be queried on my lifestyle choices, morality and my honesty. I really don't want to talk about this test ever again or go over old ground again and again. I doubt I could ever agree to this test after years and years of fighting off doctors. Mentally, I have a closed mind.I don't have any gyn exams, don't need them and don't want them.Rose
It's worth restating every now and then. The references and links for the women's thread are given down the right hand column of this blog. I consider them to be one of the most important sections of the blog. Violet to Blue's website has been referenced there since its inception.
Here's the actual journal article concerning the Dutch study for self testing of high risk HPV. Although this is preliminary, the study is based on a large cohort of women. 7400 women sent in adequate samples for testing. Of these 10% were found to have high risk HPV strains that needed further gynecologic testing. The rest did not need further immediate follow up.I assume that this testing in the privacy of your home would be far more acceptable to most women and the need for biopsies and close follow up would be reduced to 10% of the screened sample.This test is certainly not approved in the US yet, but I think it bears watching.
Melanie said,My daughter told me this morning that she doesn't like being female because of pap tests. She's 13 this month. The attention on this cancer and test is way over the top as far as I'm concerned. Apparently the test was mentioned to the girls in their health science class. The fear and worry this test causes makes me wonder whether we're better off with this test. It may have been better if it had never been devised, we could all get on with our lives and the few that get symptoms would probably be fine anyway with prompt medical attention.The situation is made worse by all these so-called abnormal results.I myself am a haphazard tester, I got roped into them when I was pregnant and now know you shouldn't test at that time. Thankfully, the tests were normal. Two friends got abnormal results and worried their entire pregnancies, retested 6 months after the birth and got normal results. All that worry for nothing.There are many negatives to this test and I do feel we'd all be better off going back to the days when we didn't give cervical cancer a second thought. Now we have very young girls worrying about cervical cancer!
Melanie, I've never heard of that before. Can you tell us what country this was in and what grade your daughter is in?It seems shocking to be worrying young girls with the fear of cancer. Yet this is the age group that is being targeted by the 2 vaccines against cervical cancer. Hard to convince girls to be vaccinated and not tell them about cervical cancer. Was this the setting?I've had mixed feelings about the vaccines. The push for them has been orchestrated by big Pharma. They however do not protect against all strains of HPV that are associated with cancer, and apparently it is still recommended that women continue to get Pap smears.
That sort of thing is common in the States, all the teen and tween sites talk about your first pelvic and pap. My mother took me along for my first at 16 and I was told I'd need them every year. I avoided it the next year and forgot about it when I went to college. My mother assumed it was happening. I always knew that exam couldn't be important for a virgin and was doubtful of the paps value for all women.It is over-the-top and always has been in this country.I'm sure this subject is raised even earlier now with the vaccines.Many young girls are really upset after these exams. They are still considered must-have exams and that is plain dishonest. We shouldn't be putting our young girls and women through these exams. If older women see a value, that is a different thing.Though most women are never able to really make an educated decision about these exams because the information is usually unavailable and the exams are pushed strongly.I found this blog wanting to find the actual value of the pelvic exam and pap smear for all women, virgins or not. Thank you for making this information available.Lara
http://kidshealth.org/teen/sexual_health/girls/obgyn.htmlHere is one of the sites, there are lots.Lara
Hi everyone,Look at Wendy's story attached, she got abnormal results after each birth.Pap smears should never be done after a woman gives birth or during pregnancy, they often produce abnormal results due to inflammation or trauma.This has been known for many years. You'll see Wendy is grateful to the pap smear even though most of this treatment was more than likely totally unnecessary. This is the problem, even after this bad experience, women are still grateful because they simply don't know and are never told about the risks of this test. They think their lives were saved by testing and become spokeswomen for the test.This is very common. Other women have the same experience, an abnormal pap after birth, and this convinces everyone how important the test is when its saving all these women. Doctors would know why these women are producing abnormal paps, so why do they test at this time?http://www.cervicalcancer.com.au/protect-yourself
DR, I think you raise a serious problem and one that worries me greatly.Our daughters are being worried about this test at very tender ages. The vaccines that are being recommended for our daughters means cervical cancer and smears become a topic when your daughter is still a child. The governments and other interested groups pressure parents to agree. I've found it a very difficult decision and not one easily explained to my young daughters. It also puts parents in a dilemma. I would prefer not to bother with this vaccine at this stage. On the other hand, if I don't agree and one of my daughters subsequently gets cervical cancer, how will I feel?The obsession our society has with cervical cancer, vaccines and smears concerns me. Is it really helpful to spend this much time on something like cervical cancer?I don't want my girls scared to death of something that doesn't occur that often, with or without screening.My friends all have children the same age and we're all concerned about the attention given to this cancer. When the vaccine is mentioned, you have to mention the cancer and then smears. This testing is a burden for many of us and I don't think its fair to place that burden and worry on our children.One teacher said that it is a great early message so girls know they must have smears throughout their lives. I don't care for the word "must". I thank you for your article on informed consent. The message we all get from almost every source is that we all "must" have smears.Haven't we lost common sense with this cancer?Why does this test override the rights of every woman to decide for herself whether she wants testing? Getting the message drummed into our children makes me uncomfortable, I want my daughters to think for themselves.Anne
I found this article helpful when considering the vaccine. I have decided not to vaccinate, but have been hassled about my refusal. It seems hassling women about smears and now vaccination is a way of life. You can hardly say these things are offered to us if declining them is regarded as unacceptable.Meaganhttp://thebulletin.us/articles/2009/10/25/top_stories/doc4ae4b76d07e16766677720.txt
http://www.dailymail.co.uk/news/article-1250905/45-shops-bribe-cervical-cancer-jab.htmlIf you're a 16 to 18 year old girl, have your 3 shots and you'll get a shopping voucher.I kid you not....
Violet, the link you gave on do it yourself (DIY) kits was interesting, but maybe not in the way you intended. The criticism of the kits was not that they are inaccurate, but that women wouldn't know how to interpret the results.I find that criticism ironic. After all there are many posts here complaining that abnormal Pap smears frighten women into thinking they have cancer when it is not true, and these are women who see their doctor. How is that different from the DIY kits? In fact a brief pamphlet along with the test could easily explain the meaning of the results and what to do about them, the exact information that women can't seem to get from their physicians routinely. That lack is seemingly what makes this thread popular.I was surprised by how expensive the kit was, though I presume that includes a DNA analysis, which is not cheap. Violet you might find out if doctors in the UK can't include women who use this kit in reaching their 80% target bonus.
"Violet you might find out if doctors in the UK can't include women who use this kit in reaching their 80% target bonus."As it currently stands UK NHS GPs wouldn't be expected to deal with these kits. The kits would need to be approved by the Department of Health first, GPs could then be formally commissioned to provide this service and payments agreed, staff would need to be trained, clinical referral pathways put in place, patient information leaflets, lab services, result letters for patients etc etc....Only then would GPs be expected to take professional responsibility for offering these kits to women, and managing the service to a target. Other private sector providers than the DrThom website may pick this up as a screening tool, but they are responsible only for a very small number of smears done in the UK.Re-reading the article I am though slighly puzzled by the comment from this chap: "Nick Wales, consultant gynaecologist at the Chelsea and Westminster Hospital NHS Foundation Trust in London, and one of the medical team overseeing the test service, said: "It is an invaluable addition to the detection of pre-cancerous changes of the cervix. "We have successfully used it in those women unable to tolerate a vaginal examination. "I believe within 10 years all cervical screening will be done this way." I assume this means he consults both for DrThom and the NHS, rather than that the NHS itself trialling this service.It's not a very well put-together article really...
A few people have said it's common for pap tests to be abnormal during pregnancy and after birth. Does anyone know of any studies or other evidence supporting this assertion? Thanks.
Paula, I wondered about that too. A brief search I did found only one lay article that said abnormalities were more common in pregnancy. Several references also said that treatment of an abnormal Pap during pregnancy had to be more conservative.I didn't find any definitive references. Can anyone help?
"The causes of an abnormal pap are numerous. As mentioned above, a simple vaginal infection, such as yeast, can push a patient into a needless colposcopy--but no one can say it's needless until after it's done. An area of healing from recent infection can mimic disease. Also, a bacterial infection, such as from rectal bacteria, can cause the non-specific finding that prompts colposcopy. And pregnancy itself makes everything look worse under a microscope. Many researchers are now coming to the conclusion that mild to moderate dysplasia may even go away after the hormonal effects of the pregnancy are out of the system."Taken from www.gynob.com/diseases.htm under "Diseases unique to and of pregnancy".It stands to reason if inflammation and hormonal changes can cause an abnormal pap, the trauma of childbirth would do the same thing.My friend was told to wait for a year after she delivered before having a smear. Her Dr also doesn't like testing pregnant women as the worry of an abnormal result is unhelpful when the chance it is a serious problem is very small.Beth
http://www.wdxcyber.com/abnpapcx.htmCervical lesions can be caused by pregnancy, labor and childbirth and by sexual activity.Inflammation, trauma, infections and hormonal changes can all cause abnormal smears.
Re: pregnancy/smear test - have collected various recommendations (US, UK, australian etc) under here (scroll down to bottom of page).http://violet-to-blue.blogspot.com/2009/12/official-recommendations-and.htmlThis is not exhaustive, of course, and if you are pregnant Paula, would recommend printing off and taking along to your midwife for discussion, rather than making a unilateral decision based on Teh Internetz. A couple of bits here as well for women being hassled about paps when they go for the Pill:http://www.wellsphere.com/relationships-sex-article/on-paps-and-pelvics/26796?query=Pelvic+Exam(although some of the links given in the article are broken)http://www.guttmacher.org/pubs/journals/3301301.html
Here's the most pertinent link from Violet's blog. It's a NHS article that states Pap tests are not routinely recommended during pregnancy because of a higher rate of false positives.I have since checked some American medical references (not everything can be found online), and as usual US recommendations are not as definite. They don't say Paps shouldn't be done; only that greater caution is needed in interpretation. Cancer can occur during pregnancy. My own interpretation of all this is that Paps during pregnancy should be avoided unless there is a specific indication.
"I have since checked some American medical references (not everything can be found online)"Do you have the references Dr Sherman? Because I'm happy to include (non-internet) academic references on V2B, for those who have the relevant medical/academic library access and want to explore the subject in greater depth...
Violet, I used UpToDate, a huge American database of nearly all medical fields which is updated every 3 months or so. They have a large section on Ob-gyn.The database is by subscription and expensive, but most medical libraries have online access to it.If you email me (my email address is under my profile), I'd be happy to send you references directly as I come across them.
Women should be very careful about smears when they are pregnant. I bled after a smear and ended up having a miscarriage. The gyn naturally said the smear was not to blame. Over the last 4 years I've read a few other accounts of women having miscarriages after smears. (let alone biopsies or LEEP)I've declined testing since, I have a feeling the way this testing is done (excessively & recklessly) we derive no benefit at a huge cost to our health, dignity and lives.My mother stood up to her doctor recently, something unheard of in most 70 year old women, no more smears or routine gyn exams for her. After reading through some of this blog she consulted an English doctor while on vacation recently and has changed her healthcare entirely. She can count up about 10 procedures that flowed from these exams that were all unnecessary and very ordinary experiences.Does anyone know whether prolapse is more likely after conization? My mother had an extreme and fairly crude biopsy (which was clear by the way) many years ago that sounds to me like a conization, she lost a lot of her cervix and has extensive scar tissue. She has a friend who had something similar and now has a prolapse. My mother fears that will be the next problem caused by this screening.This site is a valuable find, thank you.Janie
This link was posted by Meagan a few days ago. It concerns the evidence for and against vaccinating your daughters with Gardasil against cervical cancer. I'm not taking a stand for or against the vaccines, but I think everyone who is concerned about it needs to know that there are two sides to every story, not just big Pharma's side.I will add this article to my links.
Thank you to everyone who answered my question about pap smears during pregnancy. No, Violet, I am not asking because I am pregnant right now. I'm asking because I had a slightly abnormal smear after a routine pap while pregnant several years ago. (The midwife made no mention of any reason I wouldn't get one during pregnancy, no mention of informed consent, and did not bring up any risks or benefits of testing.) It turned into a nightmare for me. I read everything I could find about pap smear abnormalities (I wish this site had been around) and panicked and cried for weeks. Finally I decided I did not want an invasive colposcopy while pregnant, especially for such a minor abnormality (ASCUS). My midwives were livid that I refused the colposcopy, and I finally ended up switching out of their practice. Pap smears are not only routine in pregnancy in the U.S., they are insisted upon. That has been the experience of all of my friends as well. One of them had had a normal smear only three months before she got pregnant, and the OB insisted on another one during her pregnancy.I had a completely healthy pregnancy and a perfect birth, and yet I feel so scarred from that experience with the smear. It negatively colored what would have been the most joyful time in my life. It makes me furious that doctors may know that pap smears are not a good idea during pregnancy and continue to do them anyway. Do they not understand the havoc they're causing in people's lives?
I work in the banking industry and was based in New York from 2000 to 2004. I fell pregnant in 2004. (unplanned) I blame your system for that as well. Its very difficult to get the Pill without agreeing to a host of unrelated exams. I refused to pay that price for Pills. I fought a frustrating and hopeless battle with your doctors.I knew from an earlier pregnancy in Australia that my doctor did not do a pelvic exam during my pregnancy. I was told there was no point unless there was a problem. That won't happen in your country because doctors tell healthy women their whole lives that they "need" pelvic exams every year. Women always seem to be going to the gyn. It's bizarre.Hardly surprising the pelvic exam is a major feature of your prenatal care.I always had abdominal ultrasounds at home and the first real exposure came with the birth. (with only a midwife present)At my first visit in your country, it was you're "having" a breast & pelvic exam and a smear. My Australian obgyn did none of those things. I will only have smears 4 or 5 yearly and even though I was overdue when I got pregnant the first time, (according to outdated Australian recommendations) my Dr said she never does smears during pregnancy. An abnormal smear is common during pregnancy and just after birth and causes worry - further investigation while pregnant is a bad idea.My Aussie doctor said some doctors do exams and tests without thinking about their value and the trouble they might cause. Even in this country you'll find doctors that do a routine pelvic and breast exam at the first visit, but you won't find the excess that is routine in the States. I heard of doctors doing routine internal exams at EVERY visit during the pregnancy, multiple breast exams and large numbers of tests and even biopsies. Women are expected to become detached from their bodies. You "need" this or "must" have this, is a common expression and one I grew to hate. I was made to feel that I was being difficult or wasting the busy doctors time if I objected to anything.I saw women who were anxious their entire pregnancies over abnormal paps only to get a normal result after a retest a few months after giving birth. Many women rushed in for testing 6 weeks after giving birth and these smears were often abnormal and that meant treatment. I'm sure all of these results were caused by the trauma of birth.We decided to go home. I went back to the obgyn who cared for me during my first pregnancy.I want the bare minimum when it comes to interventions, exams and tests. One of my American friends had a smear when she was 6 weeks pregnant which came back very abnormal and had a cone biopsy during her pregnancy. (against my advice, but she was terrified) The sample of her cervix that was removed showed no cancer, a false alarm, I think caused by the changes in her body that pregnancy causes - she went through a hellish pregnancy because of interference. She had stress vomiting, went off her food, slept badly and delivered early. Her prem baby needed special care for 2 months. I know this woman would have had a normal and uneventful pregnancy if she had been cared for differently. They are small things that can make a world of difference.It upset me to see women unable to go through their pregnancies in peace. It's not much fun being a woman in your country. I felt bossed around and a bit like a herd animal.I would never recommend anyone have a baby in America, if there is an alternative. A colleague went back to Scotland to have her son last year. She had no interventions and a midwife assisted birth.Your doctors are inflexible and have poor attitudes while over-service is the norm. The way it works it also makes it very hard to have any kind of say in your care. I had the Dr and nurse berating me whenever I refused something. I think that is a poor way to treat a patient, male or female.
Being female means having a medically controlled life if you're a "good girl" or you can be an irresponsible and immature child. I choose the latter.I'm not surprised pregnancy and birth are very medical procedures, our whole lives are medical procedures. If we actually need medical help we're subjected to the greatest excess like when we need birth control or we're pregnant.I've played dodge and weave for 40 years, it gets very tiring, but I'm determined to live a normal life, not a medical one.
A pap smear should only be done during pregnancy if you are due one. There is no need to do an additional one due to the pregnancy. Internal exams are usually done in the very beginning of the pregnancy and again towards the end to check the cervix.
Here's an article from the BBC stating that HPV DNA screening is a disappointment because it wasn't sensitive enough. 70% of women with cancer causing strains of HPV did not go on to develop cancer.I think they miss the point. Of course most don't get cancer; it is indeed a rare disease and only a few prove to be susceptible. But the large majority of women without these strains can rest assured that they are at very low risk for cervical cancer and likely don't need annual or even biannual Paps as is frequently recommended, at least in the US.
Hi AllUnfortunately Teh Real World has intervened and I'm not going to have time for a while to keep researching and updating the Violet-to-Blue blog. However I'll leave the blog up as it is, as I think it's a reasonable repository on its own of the information so many of you have posted. Been a pleasure conversing with you ladies (and of course our gracious host). Kind regardsViolet
It is really not nice to point this out, but the gynecological profession is to be blamed, and not the other way round, for convincing the feminists that we need this dreadful and humiliating test. But what´s really infuriating is that any DO order the test to young women because they think we´re lying...NO JOKE, folks! Do you think it is acceptable to them to say that, yes, I´ve had sex, but I´ve made an informed decision and, no, I won`t be having the test??? To begin with, they have this deeply entrenched biblical notion that there´s something innately wrong with being a female. NEXT, THEY AVE TIED THEIR LIVELIHOOD to the test, so they are never going to speak out against it, because the stakes are high... And many, many are ignorant as well as deeply misogynistic.... Not to mention that they don`t realize that there are simply too many of them.... I think there should be very strict admission tests to enter the profession, and frankly, I doubt males have any business in it. I have been treated very unfairly by a male gyno of the old school that told me, I SWEAR, I am not making this up, in a room full of people at an hospital, out in a loud voice,that I had syphilis & chlamydia.... The problem is that the women are so afraid of losing their male´s colleagues respect that they are even more rude than the men, if that is possible. No more gynos for me. If that`s the way they treat you, I`d really rather take my chances with cancer. Which, according to lifestyle factors, it is not that big either.
Thanks Violet and Dr, your contributions are much appreciated. Don't worry about taking a break Violet, I've done that for years, but I keep coming back when my concerns start to bubble over again...usually after I've heard something upsetting like another teenager having a cone biopsy.Change has been slow to happen in cancer screening aimed at women. I see real progress with mammograms and I think the Govt has largely accepted that a growing % of women are actually making an informed decision not to screen, their absolute right. There are fewer articles about the "unscreened" and how to reach this ignorant bunch.We haven't reached that point with cervical screening and I doubt any group will happily acknowledge a % of us have made a decision not to screen. I fear we'll remain the "unscreened" - the ignorant, lower class, uneducated women.Of course, governements know if fewer than 80% of women screen, the death rate won't fall...and that is why rare cancer make bad screening tests, not to mention with an unreliable test!These group must chase women to achieve ever diminishing returns, even if that means at a heavy cost to healthy women, our health and rights.This is the reason why governments pay doctors to reach targets. They need the numbers to cover their backs and the millions this program costs them.That's why they ignore the abuse of rights and the total lack of informed consent.It's still possible though for individual women to reject this situation entirely and make their own informed decision.I know it's harder for US and Canadian women who want the Pill, but you now have HOPE and hopefully, the boycott will be eased in years to come.The States must have more gyn's than other countries. In the UK and Australia gyn's simply couldn't cope with healthy women walking through their doors for screening. This adds to your problem....reliance on these women to achieve their bottom line.I assume that's why US and Canadian medical sites stress the importance of annual gyn exams for all women starting in their teens.You won't find those sites in other countries, which seems to confirm the reason for this recommendation is not about vitally important checks, but optional (at best) being made compulsory.(and even of doubtful/poor value; routine pelvic and breast exams carry risks - and we know smears certainly do, especially annual/ biannual and early smears.) I think change is in the air in Australia although there is NO discussion about the real value of these tests or the risks.I feel sure screening will be stopped for women under 21 or 25 and only recommended 3 yearly. Our over-detection rate is very high (unknown to almost all women) and these changes are long overdue.Informed consent and breast and cervical screening is completely lacking in this country. There is more discussion in the UK, but little has changed at the surgery level.Still women can access the facts in the UK which means some women may use that information and make informed decisions.
I view smears as our punishment for having sex. Men are not punished, but when we start having sex we no longer have any rights. When you think this is a small risk, the hoopla that is made about this test is a bit ridiculous.I know it puts some women off sex.I've never accepted it was about our health and thought it was an excuse to create a lot of profit for doctors and specialists. It fills waiting rooms, day procedure centers, and specialist time.I find it all a bit disturbing and would never take part. Cancer scares me far less.
Would anyone know of any references for a couple who were virgins before their realtionship commenced?My husband and I fall into that category and there is not a word about us on the health websites.I'm aware some doctors say even virgins need smears. I don't agree with that.If this cancer needs HPV to develop, I can't see how I'd benefit from pap smears. How could my virginal husband have infected me with HPV?My doctor says all women need them and we've reached a tense stand-off. I fear she'll yank my birth control if I don't agree to have testing.I'm a private person and it worries me this test is said to be unreliable and puts many women in day surgery after false positives. I don't want to be one of those poor women. My doctor hasn't mentioned false positives to me but said false negatives can happen and that's why she recommends annual smears.If anyone knows anything that might be on topic, I'd be grateful.I'm aware most doctors assume our partners are unfaithful, but I don't. I'm confident he's faithful to me. He agrees this test doesn't seem relevant for me.Vanessa J
Vanessa, I don't think you'll find an American physician willing to say a woman never needs a Pap, except for women with hysterectomies or women over 65 or 70 who meet guidelines. I think it's mainly a concern over liability. But well over 90% of cervical cancer is due to HPV the main exception being DES babies. If you were both virgins, your chance of being infected with HPV is very small. So if you're both monogamous you have a very very small risk of cervical cancer. Of course you could still have an abnormal Pap leading to further tests.I think many women would be willing to accept that risk if they knew the facts so it's your decision. But you may have to find a new doctor who won't harass you.
This website has been invaluable! Since my last pap, I kept wondering why I was being asked to come in yearly, as I've never had a positive and I'm well over 30 now. I never felt comfortable with this test. Have been with the same man, who not had other partners, since I was 22. Had my first pap at 24. Went to the gyn at 26 for a breast concern, and agreed to a pap because I figured I should. Got pregnant at 27 and had one then. Then another 6 months pp, and another at 30. Then one at the beginning of my last pregnancy. I feel immensely lucky that I never got a false positive. Had no idea how common it was, though I did think my paps were pointless, as I had educated myself on how one gets cervical cancer (just had no idea bout the risk of false positive or how rare!). Now I'm 32 and don't plan to go back until I'm 37, if ever. Most of my friends and family have had serious procedures done, and although many haven't been in a longterm relationship like I have, none ever had actual cancer. I feel angry and hurt for all of them, considering what they've all been through!!! And again, lucky that I didn't end up like them. Also glad that my gp never bugs me about them, and assumes I am going to my gyn for them.Thanks to all of you!
If honesty had been part of this testing many woman would have been spared. My mother has had a huge number of pap smears. She had a relationship in her late teens with a man of the same age and they were both virgins. My father died seven years later and my mother has never remarried or had any other relationships.Her life has been made a misery by this testing. My mother is a timid and reserved person and she was pushed into smears very early when she was still a virgin. She got an abnormal pap on the third test and had follow-up treatment. It was scary, painful and upsetting for her, she also said it was humiliating. After an abnormal pap they test you even more often and 3 monthly smears meant another abnormal one when she was about 30. She decided not to go for follow-up, she couldn't go, the thought made her ill. She worried about it for a few years and then settled into life putting the abnormal smear to be back of her mind. She doesn't like talking about smears and turns off the TV if an ad pushing smears comes on.I've taken down some of the references from this site to show her. I think she'll feel really relieved. She's now 54 and hasn't been bothered with them for lots of years but doctors still give her a hard time about testing. She makes an excuse or lies to them saying she had one somewhere else.It makes me sad that this test ruins many lives or takes the lightness out of life anyway and for what? We make life a living hell for heaps of women to help a handful.I can't agree with that.Thanks for the references. My mother will be happy to see comments from a doctor, it's usually the same old scary lecture.Nice to know you're not all the same. Did you always have doubts about this testing? Why did you feel the need to speak out when other doctors say nothing?Thank you for taking the time to help all women and not just the women in your family.Helena
Why isn't the misinformation ever challenged?During cervical cancer awareness month there were many articles talking about this "very common cancer" and that 4.4 million US women have colpocopy and biopsies ever year (implying this was 4.4 million cases of cancer averted)Most of the "information" turns out to be either wrong or misleading.Why doesn't someone challenge the papers and magazines that publish this propaganda?Is there not one Dr or other health official concerned about informed consent? (Dr Sherman excluded from that group!)It scares me to think what else we're not being told.This is why most women go crazy if someone criticizes smears, it's the first time they're hearing any of this and blatantly contradicts everything they've ever been told or read on the subject.Thanks for helping to educate the masses.
Here's a very nice pertinent reference with respect to Pap testing of virgins or sexually inactive women. I will add it to my links.Helena, as a cardiologist I knew nothing about these topics before I started this thread. The information all you ladies have supplied has been what educated me and gotten rid of preconceived notions I had. Now I'm keeping current.
You hit the nail on the head.Preconceived ideas - somehow this testing got under the radar and wasn't subjected to the same scrutiny as other screening tests. The myth became the legend.Many refuse to even read anything negative about this test. They KNOW the facts or think they do and some argue if all that were true, why haven't we heard about it sooner?Women fear this cancer so much I doubt many women will be able to make informed decisions in the future. Fear overrides common sense and the facts.
Many of us look at well-known medical sites for our information.I looked at the University of Maryland's Medical site.It said about cervical dysplasia...I've bracketed the "facts" that seem incorrect to me after reading some of your links."Pap smears are essential to detecting precancerous lesions as well as early stages of cervical cancer. The regular use of Pap smears as a screening test has prevented (millions of cases of cervical cancer and has saved a similar number of lives".) If this is a rare cancer, and it was always rare even pre-screening, has it saved MILLIONS of lives?"Despite their value, they are not always 100% accurate. Up to 2% of women with normal Pap smear results actually have high-grade cervical dysplasia at the time of evaluation." It seems the 2% is actually about one third of women who get cancer, about 0.35% according to the pathologists article. "In some (rare cases,) Pap smears may produce "false positive" results, meaning that a healthy woman may be falsely diagnosed with cervical dysplasia. Despite these errors, Pap smears are the most effective and reliable method of identifying cervical dysplasia."How on earth can they say false positives are rare?"Cervical cancer, a major complication of cervical dysplasia, is the leading cause of death in many developing and poorer countries and accounts for 4,800 deaths in the United States every year. Most cervical cancer deaths occur in women who have not had a Pap smear. Cervical cancer constitutes more than 10% of cancers worldwide, and it is the second leading cause of death in women between the ages of 15 - 34."BUT they don't mention it's rare and is more common in older women, but still rare in that age group as well.Talk about fashion the facts to suit your story!With early identification, treatment, and consistent follow-up, nearly all cases of cervical dysplasia can be cured. Without treatment, (many) cervical dysplasia cases progress to cancer. How can you say "many" when it's a rare cancer?I query the use of the word "many"....it misleads.("Women who have been treated for cervical dysplasia have a lifetime risk for recurrence and malignancy.") Not if most of that treatment was unnecessary in the first place.Fortunately, while the incidence of cervical dysplasia has been on the rise, the incidence of cervical cancer has declined dramatically. This may be due to improved screening techniques, which identify cases of cervical dysplasia in the early stages, before they have progressed to cancer."Nothing about informed consent, in fact they take a swipe at women who don't screen by saying "most cases of cervical cancer are in women who don't have screening".Is there a watchdog for these sites, if medical sites can print incorrect information or leave women with the wrong impression, surely that is unacceptable.I expect more from a University Medical site. These sites should be tackled, it's like there sole aim is to keep women frightened and obedient.I plan to write to them and make a complaint.Is there an organization who'd make them change these "facts" and even include something on informed consent?Thanks DrTaken from www.umm.edu/altmed/articles/cervical-dysplasia-000034.htmKatie
I agree with you Katie, the Maryland site is misleading. It's grossly false to say millions have been saved by testing. That would not be true world wide let alone in the US.One point of yours though is not really accurate and others have been led to believe it here as well. Cervical cancer was not rare before the development of Pap smears. The US incidence was somewhere near 45000 per year. Now it's 11000. (You can argue that not all of that reduction is due to screening. I really don't know. Much of it clearly is.) That was near to the present day incidence of HIV. That doesn't make it rare, though certainly not an epidemic either. These sites use hyperbole to try and convince women to have testing. That could be excused IF they also told women the negative aspects of screening.
Personally, I believe taking showers everyday led to lower instances of many cancers. People seem to forget many people didn't take showers regularly back in the day (some still don't). I also think if more people actually exercised and ate more fruits and vegetables there would be an even greater drop in cancers. But I guess it's just easier to be poked and prodded every year?
Dr, we now have a situation where one in 3 American women have had hysterectomies. Wouldn't that account for some of the decline in cases of cervical cancer?I've also read that other things have contributed to the fall.There have been no formal trials of cervical screening, so isn't it debatable whether its helped all that much?Also someone must have approved that blurb for their site. Doesn't that mean a medical person chose to use a blatant lie to scare women into testing?
It may be debatable whether cervical screening has been responsible for the entire decrease in cervical cancer incidence, but I don't think it can be denied that it played a major role. I'm not against cervical screening per se; I'm against it without informed consent. I don't think any woman should be pressured into it. It's a situation which is unheard in most of medicine.Anon 1, as over 90% of cervical cancer is caused by HPV, it's hard to know how showering could help.Anon 2, I don't know the percentage of women who've had hysterectomies. I think the operation has decreased in prevalence. Do you have a reference?
In the article "Should We Abandon Pap Smear Testing? by Dr. Demay he "plays" devil's advocate and examines pap smears. On the second page of the article he says in the 1940s there were 50 million American women and 26,000 cervical cancer deaths. Which means 0.052% of women died from cervical cancer.Today there are around 100 million American women and around 4,000 die of cervical cancer; so approximately 0.004% of women this year will die of cervical cancer.When people make the statement that cervical cancer deaths have dropped by over 75%, I guess they're right. The problem is the numbers are so tiny to begin with it doesn't sense to put women through all this pain and anxiety.http://ajcp.ascpjournals.org/content/supplements/114/Suppl_1/S48.full.pdf
Dr. Sherman, I said showering probably led to lowered cancer rates in general -not necessarily cervical cancer. Sorry, for the confusion! :)
Hysterectomy is the most common gyn surgery and the second most common surgery in the States.By age 60 two thirds of women will have had a hysterectomy.http://today.msnbc.msn.com/id/23736952Ruth
Oh, and up to 70% are recommended inappropriately.http://www.rense.com/health3/hyster.htmRuth
Thanks for the reference Ruth. The article does say that by age 60 1/3 of women in the States will have had a hysterectomy (not 2/3 by the way. I think that was a typo). I'll be on the lookout for a more reliable source though.I assume that the rate of hysterectomies was nowhere near that when Paps were introduced, but I have no statistics. Even so it could not account for more than a third of the reduction in cervical cancer rates.
Dr Sherman, I have an article that shows the effect of hysterectomy rates on the incidence of cervical cancer.This is a Finnish study...They mention one third of US women have had hysterectomies by age 45 (from memory) whereas the rate is about one fifth in other countries.Finland has more hysterectomies than some other countries because one in three menopausal women use HRT which is linked with the growth of fibroids, one of the major reasons for hysterectomy.http://www.nature.com/bjc/journal/v90/n9/full/6601763a.html
I have checked several sources online. Haven't come across definitive statistics, but you ladies are correct. 600000 hysterectomies are done a year on American women. It is frequently quoted that 1/3 will have had one by age 65. That's amazingly high. I would not know if those numbers are justifiable.
Dr, an American article on the same subject.They conclude hysterectomy rates do not account for the total decline in cervical cancer...but I don't think you can assume that screening can take the credit for the gap between pre and post adjusted figures.There are clearly other factors at work as the death rate was steadily falling before screening was introduced.http://www.cdc.gov/mmwr/preview/mmwrhtml/00015908.htm
My doctor said its a simple operation now and why put up with painful and heavy periods.I perhaps should have gotten a second opinion on that as I was only 36 when I had my hysterectomy. It was keyhole surgery but still took me a while to recover. I was also told having had an abnormal pap at 24 it was another risk removed for the future.
Here's an informative Time article about hysterectomy rates in the U.S.http://www.time.com/time/health/article/0,8599,1644050,00.html?cnn=yesDr., You say hysterectomies "could not account for more than a third of the reduction in cervical cancer rates." However, older women (between 30-90), especially those with gynecological problems, are more likely to have gotten hysterectomies. Isn't that the same group that would statistically be more likely to get cervical cancer? It seems to me that hysterectomies could therefore account for more than a third of the decline of cervical cancer deaths.Also, it's my understanding that cervical cancer was declining before the introduction of pap screening. http://www.bmj.com/cgi/content/extract/315/7113/953http://ije.oxfordjournals.org/cgi/content/abstract/17/2/270
Anal cancer in gay men occurs as often as cervical cancer.I know the profession is looking at anal screening, but they are certainly not rushing into it.The pros and cons are being carefully evaluated...perhaps that should have happened before cervical screening was introduced.I wonder if doctors will get payments for screening their male patients and like the doctors who push smears at virgins, disbelieving their virginal claims, I wonder whether they'll push this test at all men?Even though the link with HPV has been known for years, no Dr has ever mentioned screening to me.http://clinicaltrials.gov/ct2/show/NCT00914537
I have an insight into the high number of hysterectomies. I was born in the States and moved to Perth, Australia when I was 28. Two sisters still live in Knoxville and one lives in Tampa.We range from 48 to 55.Two of my sisters have had hysterectomies.Its the way doctors think of the female body that's the problem. At about 14 we were told that our bodies needed medical checks every year to "make sure everything is healthy". There is a presumption of vulnerability to disease and we need that medical reassurance every year. My sisters use an obgyn as their regular physicians.This thinking has never changed even with the increase in female doctors and their dominance in the field these days. The paternalism that probably started these annual exams prevails. Most other countries moved away from that thinking, if it ever started.It took me a while to accept a more relaxed approach and develop some faith in my body. You do become imprinted with this thinking.The first time I went to get my birth control refilled here I was prepared to have the usual exam and was surprised when the doctor did a general blood pressure test and wrote out the script. We see a general practitioner (GP) here for regular or routine care and are referred to specialists when we have a health problem that needs specialist care, need surgery or prenatal care and childbirth.I don't know any healthy woman who goes to an obgyn for routine care.I was overjoyed and then felt concerned something might get missed and raised the exams at the next visit. After the doctor explained to me that sort of exam is not required in a healthy woman, it started to make sense. Pap smears are available 2 yearly but my doctor only recommends them 3 yearly and I've never been pressured to have one. It does feel like its my decision which is a strange feeling.I even got told about false positives and false negatives.I've tried to convince my sisters to stop going for these exams but when everyone you know is having them and your doctor looks deeply concerned when you suggest skipping them, it seems to draw you back into the system.My youngest sister always had a hard time with those exams and was relieved she could skip them. She's the only one who hasn't had a hysterectomy. The operation here seems to be a last resort type surgery and is nowhere near as common.There needs to be a major review of the exams that are said to be important checks for all women. There needs to be an un-bundling of these exams with HRT and birth control. No invasive exams are required for either in this country.American doctors use fear to keep these exams alive and try to get to girls when they're young so it becomes a lifelong habit. When one of my sisters said she was thinking of winding back the exams, the doctor said she hoped, "nothing starts that could have been caught in time. I hope you don't end up regretting your decision." These doctors go to conferences and would know the true medical importance of these exams.Until these things happen, nothing will change for American women. You can't change the system overnight but there are many people determined to keep these exams happening despite the medical evidence. Lynette
A paper on the routine pelvic exam and why it is not recommended or of value in well women.Perhaps you should all read this paper and ask your doctors why they think they're important or is it a bad habit?I know these exams cause major worry and distress to your women. I knew these exams were not something any healthy woman needed or should have and wasn't the slightest bit surprised when they were then having ultrasounds and biopsies. (I studied in the States for 2 years)The profession is very happy to do exams of no value or even risky exams on women and without informed consent or even with no consent at all in some cases.I found it curious that screening for ovarian cancer is not recommended with an "inaccurate" test and when it "only" affects 1 in 70 women....yet we bother all women with an inaccurate test to find a cancer even less common and one that affects 1 in 200 in Australia - you guessed it, cervical cancer!I think all of it can be no more than an option and with an honest breakdown, many women would refuse all of it.I don't have any screening or routine breast checks. It was my idea, I took charge. I couldn't find anything that convinced me any of it was a good idea. Doctors have accepted my decisions apart from a bit of pressure with pap smears. I've made my decision though. I've never been refused the Pill. If I see a new Dr, I advise them at the start what I will and will not accept. If you go in and say nothing, you may get an unnecessary breast exam and certainly smears. I haven't found any doctors wanting to do a pelvic exam though. There are some women who want the whole exam. As long as they know the risks, I don't have any issues, but women should never be advised that these exams are important for their health, the reverse is usually true.http://www.racgp.org.au/afp/200611/20061103stewart.pdfBMcK
http://www.cbsnews.com/stories/2009/01/05/eveningnews/main4700603.shtmlGreat site Doctor.Here is an article that says 600,000 unnecessary breast surgeries are being done on women every year - surgeons are doing a bigger procedure when a needle aspiration would do...Over 90% of these biopsies are benign and another percentage are DCIS so it's debatable whether those cancers needed detecting and treating.This amounts to a lot of unnecessary biopsies. These biopsies are probably caused by the routine breast exams American women have from an early age often mid teens. Breast exams have not been recommended in the UK for quite a few years although the practice may vary doctor to doctor. My Dr certainly does not recommend breast or pelvic exams.Have you heard that biopsies can trigger breast cancer? I've heard that is the case but could find no hard evidence supporting that statement.Carly
This article says 1.6M breast biopsies are carried out every year and 40% are the more serious surgical biopsy. This exposes women to greater risk.http://www.entrepreneur.com/tradejournals/article/193368540.htmlCarly
When the NHS had to provide risk information, the numbers of women having smears dropped.The only concern seemed to be about income falling for GP's.Made me think this test is mainly profit driven and that's the reason it's used excessively.http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4000192
Here's a fairly good lay article explaining the controversy in breast cancer screening.A two sentence summary would be that mammography has value but is oversold. Informed consent, as always, should apply.
Here's a current link to a forum thread regarding pap smears. The reaction is truly unbelievable if anybody questions pap smears or says that the don't go because they are traumatized by it. Some women are even bullying those that have huge anxiety issues over pap smears. It is very strange and disturbing behavior.http://www.essentialbaby.com.au/forums/index.php?showtopic=779800Nic
Anon,I read through that site and it made my blood boil reading some of the others' comments to the original poster. This one (on 2nd page of comments) really stuck out:"I had Cin I carcinoma at the age of 19. I had only had one sexual partner, and had only been sexually active for about 18 months at that stage.This is more than just a sexually transmitted disease. It is also life threatening. And with the amount of knowledge that is widely advertised, I feel very frustrated to read OP's such as this. These women are playing with their lives.Get them to do it - now."First, she had CIN1, which, if I am correct in my reading, is the lowest grade of abnormality and very well could have regressed were she to have been re-checked later. I don't believe it is carcinoma (cancer) as she says -- it is cells that looked somewhat abnormal during testing. Also noticed that she said she was 19 at the time of testing -- an age at which it seems there are cervical changes that are perfectly normal but may be read as abnormal on a test. Just goes to show you how misinformed so many women are.
It would be interesting to compare the rates of hysterectomies vs the rates of cervical cancer. I think you will find a correlation. I would also presume that in the past, as people were married at a far younger age and of course because of social norms, that virgins married virgins. So I wonder if it is possible that the cervical cancer rate before screening was supposedly so high? I'd like to see proof in those figures.NIc
Actually that reaction is a well known phenomenon of screening.The more unreliable the test and the more unnecessary treatment, the more women believe the test saved their lives. Why?Because women are never told this cancer is uncommon and have no idea about false positives. It's still unusual to even see a medical site that clearly explains the risk of false positives. I saw one recently that described false positives as rare, but mentioned false negatives. Probably because false negatives might scare women into testing every year.A 19 year old girl with CIN 1 is hardly strange - 1 in 3 smears WILL be abnormal in that age group, yet cancer is almost unheard of...1 or 2 in a million and these very rare cases would probably be missed by a smear.(I know a case involving a 21 year old woman, the youngest recorded case in Australia...the woman had a normal smear 6 months before diagnosis)This is the reason fewer countries are testing women under 21, 25 or even 30. The risks outweigh the benefits.I don't blame these women, they "think" they have the facts...not surprising, all the information we get is shaped to get us to screen and not to inform us.
I was watching that show "The Doctors" a while ago. During the Q&A a woman asked when should she start taking her 13 year old daughter to the OB/GYN. The Dr replied "now". Isn't it unbelievable! It's like she's gone through puberty so now her body's ready to become cancer ridden! The irony is that testicular cancer is very common in teenage boys and young men yet their fathers are not rushing them off to the doctor's.Nic
I cannot imagine how traumatic it must be for most 13 year old girls to see a gynecologist. I guess when you get them young and brainwash them, hopefully they'll keep coming for the rest of their lives. No wonder many women get emotional when told these exams are unnecessary. It must be awful to suddenly find out at 40 that it was all unnecessary.It's almost like getting girls "used to" exposure and intimate probing.I can only thank my lucky stars this was not the practice when I was growing up. We saw a doctor when we were unwell. I don't think women are healthier for all these exams, but I'll bet you've all had more diagnostic tests than the rest of us.Relieved Aussie
The US system is really sick. I wanted the Pill to stop my periods for a month long hike. I was a virgin at that time. It was the first time I'd seen one of your doctors and went to student health. I was happy to see a male doctor because I assumed he'd follow the usual practice of blood pressure, a few questions and that's it. Quite a few of my friends have been taking the Pill for years and I know the drill.He told me he wanted to do this huge gyn inspection and I knew that was unnecessary for any woman, virgin or not. He then said as I was a virgin, he would give me the script with a "visual genital inspection" and a rectal exam. I naturally assumed he was a pervert and bolted out of the consult room. I suffered the inconvenience of my period during the hike.I was amazed when my friends told me that is usual for a US doctor. They can basically do anything they like because they are doctors.I'm very pleased I'm not an American woman. My doctor said it would be a police matter in Australia. If there is no medical reason for such a request, he'd be in serious trouble. There is no medical basis for any exam apart from a general check.Never had a gyn exam, never will. It's complete nonsense.
The last comment by anon is a little extreme. Again I hesitate to make recommendations as I can't pretend to be an expert in gynecology.But, it may well be reasonable to question the value of well women annual exams. I don't think it is reasonable to do so if you are symptomatic.Never having a gyn exam also means never having a Pap smear. If you are at risk (by age and sexual history), that is also not a good decision.None of that implies that women should be forced into these exams. Informed consent based on knowing your personal risk benefit ratio is crucial. I hope this blog can help women reach informed decisions.
This is another forum I frequently visit. It is a hysterectomy forum. I am now wondering if many of these women are having hysterectomies when they don't have any signs of cancer? What is "precancer" anyway. Is that a legitimate diagnosis? Here is a thread that is making me wonder if this woman really had cervical cancer.http://www.hystersisters.com/vb2/showthread.php?t=399488Nic
Can I also add this quote."I had what he called punch biopsies done years ago when I had dysplasia. I do not remember any discomfort and of course then I was able to have treatment of those areas and go on with life. I even went back to work a few hours after the cryosurgery and Leep I had. At that time I did not even realize how close I was to having actual cervical cancer. My gyno never explained that to me. Hopefully you will not need any procedures after your biopsy. You are young and will probably heal from it very quickly."Am I now under the impression after reading Dr Sherman's blog that this is all scaremongering and unnecessary? That this woman wasn't at all "close to having cervical cancer" ?Nic
Nic, I'm not qualified to give a reliable opinion and very little medical information is given with those comments. But CIN3 is the usual precursor to cervical cancer. Most women will not progress to cancer and will resolve, but persistent and recurrent CIN3 is worrisome. If a woman doesn't want more children, a hysterectomy may be preferable to years of worry and never ending procedures. A woman seeing a gynecological oncologist should be getting the best care and advice available.Undoubtedly years ago unnecessary hysterectomies were far more common when cervical cancer was less well understood and the natural history of it poorly understood. A woman faced with this problem should be sure to see a fully knowledgeable physician who's willing to explain and discuss the situation thoroughly including alternative treatments.
I now know that if I hear the words precancer dysplasia or even cancer that I don't need to panic and agree to whatever the doctors says. Wow. First I learnt all about how doctors have done millions of hysterectomies on women who didn't need them. Some who didn't have children. (From the HERS foundation blog) And now this on cervical screening.It's like finding out Santa Clause and the tooth fairy don't exist. It's like nothing has changed since the 19th century in gynecology.And the men are still going on and on about exposing themselves to female nurses over at Dr Bernstein's blog. Modesty is the least of our worries.Nic
The problem with cancer screening in general is you never know who really benefited and who was never going to benefit. I was reading some older posts and one mentioned a newspaper article that said 4.4 million US women had colposcopies and biopsies each year -kind of hinting that 4.4 million cases of cervical cancer were avoided. It's impossible to know who really had cancer, if they even truly had cancer, if they would have developed cancer, etc. Like I said, it's impossible to know.
I'm 52 and almost everyone I know has had a call-back.In an unscreened population only 1 to 1.5% of women would get this cancer. I prefer not to start the diagnostic merry-go-round. It draws you into a never-ending cycle of very frequent smears and more treatment. I read recently that there are lots of things that can cause an abnormal smear - human error, hormones, inflammation, trauma or infection and even perfectly normal changes in our cervix that occur at various ages.All of these abnormal smears need follow-up....not many women are happy to just leave an abnormal result.I looked at the low risk of this cancer and decided to skip them. None of my friends have been helped by these treatments, a few were worse off. All had normal results or inflammatory changes etc that don't mean cancer.I think some treatments blast away pre-cancer cells and these women never know whether they had a real problem or not...because there is no pathology. These women invariably think they had cancer.The work this test creates for doctors is huge. I feel that is a big factor in its promotion.I became suspicious when a friend, a virgin, was pressured into testing and ended up in this awful cycle. It had a bad mental affect. She hasn't tested in about 6 years.I don't tell other women I don't test, I wouldn't want to influence anyone else's decision. I accept the wee risk, others might not be happy to accept even a wee risk.I've never had a gyn exam because I've never had any symptoms that needed checking.I strongly disagree with gyn exams for healthy women with the exception of smears for women who want them, but I doubt many women know what they're agreeing to or giving in to.
Dr, doctors say having a cervix means you're at risk or if you've had sex once.They cast the net so wide there is no room for informed consent. Some Dr's even test virgins and women who've had hysterectomies so being female is enough for those doctors.Actually if a UK doctor asked for a visual inspection from a healthy woman who wanted the Pill to stop periods during a hiking holiday, I think she/he could be reported. Medical basis is a factor in professional misconduct hearings and some cases are handed on to the sexual assault team.I was looking at an American site called "Your first gyn exam" and they mention a visual inspection that I thought was a bit weird and creepy. If a pelvic exam is omitted for the very young, the inspection still sounded like it was included...Lisa
"And the men are still going on and on about exposing themselves to female nurses over at Dr Bernstein's blog. Modesty is the least of our worries."Why is this necessary? Everyone has their own issues. Maybe women are not as modest as men, or maybe they have better choices?
I think modesty is a huge factor for many women. I don't agree that because we're women we have less modesty. I'm a very modest woman and got myself into a terrible state before having my one and only smear at about 22. Thank goodness it was normal, a very lucky break when 1 in 3 smears are abnormal in young women. (false positives etc, NOT cancer or pre-cancer)Also, if there is a genuine reason for exposure and its on your terms, most of us find ways of coping, otherwise it can throw up negative feelings like resentment.Dr Sherman, Professor Michael Baum described Dr Raffle's research as explosive and went on to say women should question the need for this testing. When Anna Saybourn, the journalist, said she wouldn't have any more testing while the risk of a false positive was so many times more likely than fairly rare cervical cancer...the Dr said it was a reasonable decision to make and suggested more women should decline testing.Have you had contact with Prof Baum? I notice way back in these threads contact with Angela Raffle. I stopped testing after reading that article...Prof Baum's comments were reassuring, but it was more finding out the rareness of being helped by this testing all the while exposing yourself to the risk of very unpleasant and painful treatments.The article was called, "Why I'll never have another smear test", by Anna Saybourn, published in the Guardian, a few years ago now.I was a VERY HAPPY woman the day I read that article. The screening mob had a crack at him all the while dodging his well-informed comments.It sounds like American women have other battles, with smears out, I have no invasive exams to worry about, unless I develop a problem or symptoms.Here is one contented, healthy and happy woman!
Sheryl, I did ask Dr Raffle to review my article on informed consent which she graciously did. I have had no contact with Dr. Baum.Here's the article by Anna Saybourn which you mentioned. It is worth a read.
No Anon women ARE as modest as men. And since I posted I am actually very angry thinking about all the times I have been FORCED into pap smears when I absolutely DETESTED being exposed and then PENETRATED with an object. What choice did I have? Nobody told me I had a choice. The first time I asked for BCPs I was told "You HAVE to have a pap smear". I was a virgin. I have been reading Dr Sherman's blog for well over a year. Over and over again men are hypothesizing about perhaps ONE single operation that they may have sometime in the future. It hasn't even happened for many yet but they are up in arms about being prepped by a female nurse. Now that is fine, they have every right to have their issues, but if you are a female and try to regale your real experiences of modesty violations, a lot of the posters REFUSE to acknowledge that it happens. I too am sick of being AMBUSHED by doctors (male ones especially) for a pap smear and I will not have them anymore.Nic
This test is traumatic for many women therefore we should all have a choice and be told the pros and cons of testing.I entirely agree with Dr Sherman's article and thank him for his contribution. If you google informed consent and smears you get a few articles from the UK (many accessible only to doctors or other subscribers) or Dr Sherman's article. In other words, this article is probably the only balanced article on the subject readily accessible to women. In 2010 there is still very little pros and cons information out there.Most women still don't know about the risks of testing. False positive information and the harm done by conizations is hard to find and access.I worked as a receptionist at a doctor's surgery for 5 years and thought this testing reduced our collective dignity. Many women felt "set upon" and few would have provided informed consent. I saw files with tabs reminding doctors "to get this smear done"...NO EXCUSES! I saw no information leaflets for women except the scary signs we put in the waiting room. The "resisters" were women who refused smears or kept making excuses. After a few attempts they were marked for "special treatment" which meant the senior doctor would enter the consult room at the end of the visit and the two doctors would pressure and frighten her. I always hated these sessions and overheard several over my time when there were raised voices - some women sobbed, others became angry, others were like scared rabbits and one actually bolted out of the surgery. I recall a young women who gave in and left very distressed; we didn't see her again even though she had been a regular patient receiving treatment for bronchitis, asthma and allergies. I always thought this was wrong. I'm sure it still goes on today. One thing is behind this disgraceful treatment of women: the screening target payment system.One of your posters described this testing as the greatest abuse of our rights in the developed world: I agree with her.Good luck to all of you, we're in this together...stay strong!Glenda UK
Glenda is correct.Money is behind this screening.I always believed in this testing and really thought this screening prevented millions of deaths every year and so the bullying was warranted.I mentioned this to one of our doctors last year and he laughed and said we'd all been hoodwinked. He said with no screening he'd be lucky to see one case of cervical cancer in 50 years, with screening the surgery refers about 70 women a month for colposcopy/biopsies and often LEEP.He said he was more concerned about missing out on his target payment which was thousands of pounds a year. This screening is big business based on a bunch of lies.I stopped testing at that time and just removed myself from screening records. I'll have to do that every 5 years as its impossible to entirely remove yourself, "we don't have that facility" I was told.Look into this testing and you'll find more skeletons in the cupboard than you can count.It breaks my heart to think of the countless women we've sent to the colposcopy clinic - all terrified of the pain, exposure and of cancer. It is inexcusable to treat women like this.
My question is: If you do not want a pap smear but are forced into having one because you think you have to, isn't that sexual assault? Don't doctors care that a lot of women get extremely anxious and traumatized by this exam? If you read about this topic on a thread that I posted about earlier, one woman there has been sexually assaulted and cannot bring herself to do a pap smear. She is then extremely anxious because she is fearful that she may have cervical cancer. How can doctors have a clear conscience when this is the result of their scare mongering? Every day I lose more and more respect for the medical profession.Nic
I was coerced into having paps. I was told over and over that I could get cancer and die within six months. When you tell that to someone repeatedly it scares them into testing. I never wanted one, but my doctors used BC to force me into these things. When I said I didn't want BC anymore two doctors came in and told me the "consequences" of not using BC or getting paps. I started crying and forced my way out of the room. I am a survivor of rape, and this treatment by doctors feels exactly the same way. I have nightmares about this stuff and I've become obsessed with learning everything I can about this test. If I had been given all the information at the start I would not have agreed to this test. I already have issues from the assault and paps bring all the pain back plus some extra. I cry all the time because of what doctors did to me and it actually feels worse then being raped. I had no power over that, but I had control over whether I had a pap; but at the same time I don't feel like I had any control. I feel like I stupidly gave into them and let them do whatever they wanted and I hate myself for that.I'm willing to accept the risk of cancer; besides there are so many cancers out there that we don't test for. I'm not worried about any cancer, I have enough on my plate as it is. -Heart Broken
'Broken Hearted,' I wouldn't usually comment but clearly you feel guilty about behavior which is not your fault. You surely need help dealing with it and I hope you will reach out to obtain it.
Thank you Dr. Sherman, I had a lot of counseling concerning the assault, but I can't find anyone who could help me with the trauma concerning paps. I wish more people could see the emotional/mental problems these tests cause. The most common reaction is 'every woman gates them, get over it.' Well, if everyone hates them maybe there's a problem.-Heart Broken
God I love the internet!! The insight into how doctors operate has been the the greatest gift of the internet to women in particular. How sad that I now feel that if I want unbiased and the best information on anything medical, that I will post on a few trusted forums first. Some posters seem more knowledgeable than doctors I'm afraid.
It really is hard to get the full story across with screening.I saw on the News an interview with Martina Navratalova (not sure of the spelling) the tennis player...just diagnosed with breast cancer thanks to a mammogram. She's urging all women to have yearly mammograms as she'd let hers slide for 4 years.BUT, she has ductal carcinoma in situ.The points that are missed by all, mammograms have never been recommended annually in Australia and that as I understand it, most ductal carcinoma never progresses and doesn't need treatment. It amounts to pseudo-disease and about 40% of older women have it.I read a few articles on mammograms linked from this forum.Fear will drive many women into or back to the program.Shame they never tell us the whole story...once again we get praise for a screening test that probably picked up something that would never have worried the woman.If these tests injure us or expose us to unnecessary treatments, are they really helping?I will still refuse mammograms despite Martina's well meaning but incomplete and possibly risky advice.Kath
Edith What angers me is the ad campaign they are running here in Australia at the moment for pap smears. They basically say that yes the pap smear may be uncomfortable but it is no where near as uncomfortable as the treatment you will receive if you have cervical cancer that has been left too late. No mention of all the uncomfortable unnecessary followup procedures for false positives. The more I think about this the more I feel I have been sexually assaulted. I am one of those who find the test highly stressful. It is so unfair that I have spent the last twenty years being extremely anxious every time the test was looming. How could the medical profession do this to us?Nic
Nic,Pleased to hear at least one Australian disapproves of the way screening is "presented" to women.I've had issues with Papscreen for years and think them an arrogant, dishonest and disrespectful authority. They are military/propaganda based and certainly not an organization engaged in informing women enabling them to make a choice.I strongly disapprove of their campaigns, which are sensational scare mongering and misleading.I've complained to them a few times but they have no time for dissenters.Look at their website - no mention of informed consent, using psychologists to manipulate the thinking of women to scare them into screening or make them feel immature, irresponsible and reckless. It saddens me there is NO discussion here about the real benefits of screening or the risks. They have effectively deceived the entire female population and crush dissenters swiftly.I would love Dr Sherman's article to appear on the front page of every national newspaper. Women need to be informed of this deception and the unethical tactics.
http://www.nytimes.com/2003/08/12/health/12PHYS.html?pagewanted=1I only allow evidence based exams and tests.Our doctors over-examine to cover themselves and because many patients expect these unhelpful exams.If you don't want them, say so!I also rejected smears as my husband and I were not sexually active before we started dating. I couldn't accept the risk of false positives when my risk was so low. I didn't get that information from my doctor, but from my father, who is a Dr.The article says routine pelvic, breast, testicular and rectal exams are not evidence based exams.It's interesting reading and thought some of you might find it helpful. If you wanted to refuse them, you needn't fear you're exposing yourself to great risk.Vanessa
Informing women of risk does mean fewer women will test.The numbers testing dropped after the NHS (UK) were made to release this new leaflet.I know several women who won't test again and would never have tested had they been given these facts at the beginning. One is seeking legal advice as she is outraged that the situation was grossly misrepresented to her.http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4000192
This is a very interesting discussion.May I add that reference to rates of cervical cancer in the developing world is unhelpful as factors peculiar to their situation affect the rates of cervical cancer.Having worked in Africa there are several things that increase the risk and death rate from cervical cancer.I don't regard this cancer as a serious threat in the developed world and feel the current testing does more damage than anything else. It might be ethical to restrict testing to high risk groups given the low numbers affected by this cancer.In Africa there are several factors that increase their risk fairly dramatically,a) very early onset of sexual activityb) multiple partnersc) sexual intercourse during menstruationd) unhygienic practices during menstruation (use of newspaper or toilet paper instead of tampons and napkins)e) the male preference for a dry vagina and the use of muti and other substances to dry the area causing abrasions allowing easy transmission of infections and virusesf) lack of condom use.g) High STD's ratesg) Poorer general health and diet and an inefficient immune system.h) High numbers of pregnancies and at an early age causing more trauma to the immature cervix.I could go on, but I'm sure you all take my point.When doctors point to worldwide death rates from this cancer, it is not a fair reflection of risk for women in the developed world.Not even close.I have never been concerned about this cancer. I do think all women could benefit by a simple course at high school pointing out ways to protect themselves from this cancer. Things like delaying sexual activity, use of condoms, limiting your sexual partners, know who you are sleeping with (their sexual history and if they have STD's) and maintaining good levels of hygience, a decent diet and some regular exercise.I think reliance on screening is a risky insurance policy.I don't fear this cancer because I have protected myself from the risk factors. Preventing it in the first place is quite simple when you know how...sadly, total emphasis in many countries is on screening with little time spent on educating women to avoid infection from HPV in the first place.http://www.thefreelibrary.com/Sexual+and+menstrual+practices:+risks+for+cervix+cancer.-a0170582037
Thanks for all the references.Vanessa's reference on the unclear value of annual physical exams is worth noting. There is indeed little evidence that going much beyond a blood pressure check and an occasional blood sugar check has much value in asymptomatic people. Most people have enough intercurrent minor illnesses that they don't need to make a formal annual physical a priority.Of course many patients deny symptoms until very late in their course and do themselves harm. But I'm sure a reliable self aware person can do very well only seeing a physician when they have symptoms.
Just to add that even though cervical cancer is more common in Africa and other developing countries, it is still way down the list of problems.There are many more likely threats to the health of women, such as malnutrition, childbirth, physical and sexual violence and infectious diseases. (including HIV/AIDS)Cervical cancer is still down the list, but a problem none-the-less in the developing world.
I've worked in the Phillipines and Africa and agree with the earlier poster.I've heard our doctors say lots of women die from cervical cancer in these countries "BECAUSE they don't have screening". Implying that without screening in the developed world, we'd lose the same number of women.Total nonsense.These women have many more risk factors than western women. There is NO comparison between the two sets of women.The things that would save the most lives in these regions are NOT money spent on screening programs, but condoms and education as to their use, (birth control & STD's/AIDS) clean water, better & more food, immunization, better sanitation & decent midwifery services. I think non-barrier forms of contraception are probably a bad idea - women need that protection.I wouldn't be spending millions on screening in any developing country. Get to the basics and the death rate will fall right then and there.John H
Oh I love the irony! When my Dr was trying to sell a unnecessary hysterectomy to me he was telling me I wouldn't have to have pap smears anymore! I declined the hysterectomy. I said I'll choose death. I'm not joking.Nic
http://www.pulsetoday.co.uk/story.asp?sectioncode=20&storycode=4113125I love this doctor.It is such a shame that there are so few doctors able to look at screening and what is actually being done to us, he calls it "medical facism", love it.My doctor feels the same way. I get no pressure, common sense answers. He does not offer cervical screening and refuses to even put the BreastScreen and Papscreen brochures in his waiting room. He says he doesn't think its right to give this information to his patients which is basically propaganda. He cares about the welfare of his patients.There are a few doctors that are rising above this irrational screening frenzy.
http://healthnews.benabraham.com/html/mammography_causes_cancer.htmlAn interesting look at the history and forces behind breast cancer screening.The things we don't know are terrifying!
I feel compelled to state that I believe Raymond's link promotes conspiracy theories. Some points are valid, but others are given without documentation.THIS THREAD IS NOW FULL. PLEASE CONTINUE ON PART 5.
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