The current issue of the Journal of the American Medical Association contains an article whose headline is:…
"A sinister cabal of superior writers."
The current issue of the Journal of the American Medical Association contains an article whose headline is:…
Article comments
— go to most recent comments76 - Mike H
You may care to look at the statistics regarding the actual number of women who avoid death due to this testing.
The figures are very low when you consider the total number of women screened and sent for colposcopy and biopsies.
Some doctors do not agree with this testing because of the potentially harmful over-treatment OR believe it makes full disclosure imperative...AND highlights the need for doctors to obtain informed consent AND possibly give women options as to the frequency of testing and when they start and finish testing to minimize the risks.
Hope this information is helpful to some of you.
77 - Harriet
The link to "Screening Wars" didn't work...here it is again, it really is an interesting article and worth a read.
78 - June
'By offering screening to 250,000, we have helped a few, harmed thousands, disappointed many, used £1.5million each year, and kept a few lawyers at work.' (1)
This is a powerful statement in my opinion, made by one of the leading people in the field.
Take a look at the entire article at:
"Informed participation is essential"
AE Raffle BMJ 314, 1762-3, 1997
79 - GF
I find it negligent and certainly disingenuous to fail to provide references, whilst claiming you want people to make informed decisions. (Quote:Cindy)
I'm afraid I find it negligent and disingenuous of the medical profession to inflate the risk of this cancer to scare women and to make the conscious decision not to tell women the risks and limitations of this unreliable test leading to further invasive testing that can leave you with health problems.
Also, there are plenty of references here...I've found them very helpful.
I used many of the links and compiled a list of questions for my doctor.
The statistics are hard to deny...now I know I have a MUCH higher chance of biopsies for a false positive than getting cancer...it helps me with my decision making.
The statistics by Dr Raffle are amazing...1000 women need regular screening for 35 years to save ONE woman from this cancer.
No one ever told me the risk of this cancer was very low to tiny, (depending on your and your partners sexual history)
No one told me the test was unreliable,
No one told me so many women have false positives and biopsies simply because the test was wrong,
No one mentioned false negatives,
No one told me there are increased risks with more frequent screening or screening before you're 30.
No one told me there are real risks with biopsies and I might be left with problems...very embarrassing and serious problems.
No one told me informed consent was necessary or that the brochure I was given was misleading and incomplete...
No one told me any of that....I didn't know doctors are paid to reach high screening targets.
I didn't know screening has nothing to do with the safe use of birth control pills. (now confirmed by my doctor!)
In fact, I was simply told the test was required for all sexually active women because this cancer was a huge threat...and the test was reliable and there were no risks.
NOT TRUE
Also, no one ever told me two virgins are virtually no risk for this cancer...you can't catch HPV from a virgin and there are lots of articles on line and my Dr confirmed (finally....I get some information!) you can't catch it from toilet seats, clothing, towels or hot tubs.
Take some questions from these articles and speak to your doctor...see if your doctor looks as uncomfortable as mine did....like a small child being caught out on a lie (or a pile of them!)...
I'm so glad I refused this test until I did my reading.
So, the whole way this screening is pushed onto and presented to women....
Negligent and disingenuous....yes, I think so!
80 - Deborah B
The unreliability of these tests actually feeds into the cycle of fear that keeps women attending...
Let me explain...
I had a mammogram last year...my first at age 50.
I didn't ask too many questions, just accepted my doctor's recommendation.
The mammogram came back showing an area of concern...I froze, CANCER....
I attended for another mammogram at a large public hospital...and had a repeat mammogram and then another mammogram of the right breast (all that radiation and squashing my poor breasts!)
Then it was an ultrasound and the female radiologist examined my breasts...and then a very unpleasant procedure...several biopsies of my right breast.
It took all day and was emotionally and physically draining.
I had to wait 24 hours for the pathology results...I was physically sick with the worry and sat up all night patting my cats.
I thought about what I'd do if it was cancer...and it was an area of concern...so it might cost me my life.
This shocking anxiety is very bad for your health.
I found out the next day (with my husband in attendance)it was nothing...no cancer.
I walked away relieved I didn't have cancer, very relieved, but the anxiety stayed with me for about a year...just a tension in my stomach.
I started to think about cancer a lot and imagine symptoms...I wasn't focusing on life, but cancer and death.
I felt like I'd had a cancer scare, when in fact there had never been cancer.
I felt I'd had a close-call, a health scare, when that was simply not true.
I decided to spend a few days in the medical library (next to work) and found an lot of material that was highly critical of the mammogram...the high risk of a "false positive" (what is that?)
and even research that suggested regular mammograms may increase the risk of this cancer (Oh, great!)...this research was by the highly regarded Nordic Cochrane Institute.
Instead of walking away from that screening session relieved, I should have been angry. I was never told that false positives are common and lead to biopsies (which are a risk factor for cancer)...
I was never told about ductal carcinoma in situ (mentioned elsewhere so I won't go into it)....a diagnosis of DCIS puts the woman in a difficult position. We didn't know about DCIS before screening...it is so slow moving that we usually die of something else...
Once they find DCIS...what do you do?
Ignore it and hope it doesn't turn nasty...Unlikely
Usually you err on the safe side and have surgery...lumpectomy or mastectomy.Some women just start chemotherapy...and put up with all the side effects.
A few may adopt a wait and watch approach, but once DCIS has been biopsied, it can become aggressive, so usually doctors recommend the removal of the breast.
The worrying thing...lots of older women have some DCIS and screening means dealing with a cancer that probably would never have bothered you.
You may face insurance problems and your daughters (if you have any) will face earlier mammograms because they are perceived at higher risk (which is probably not right)and may face false positives etc...
Mammograms before 50 are VERY likely to lead to biopsies.
I can understand why all the women having abnormal smears and treatment for false positives would also walk away relieved and maybe even thinking screening saved their lives...when in fact, it's exactly the same as breast screening.
We should all be angry because doctors chose not to fully inform us and as a result we went into the screening ill-prepared for the next diagnostic step.
I've now taken myself off the Breast Screening Registry and feel enormous relief...
I won't be going through that again...
I'm breast aware (I don't self-exam, that is no longer recommended by my doctor and the medical associations in this country)
and I'm considering whether I'll have an annual or biannual breast exam by a breast cancer physician (after I do my research)
I no longer just accept my doctor's recommendations for screening, I'm more aware of it's failings and the risks and I have a deeper respect and understanding of my body.
I think all of this screening has changed our focus from life to death and I think that in itself, is very unhealthy.
I won't live like that...but I won't be sticking my head in the sand either...if I'm high risk for something and there is a reliable test...they I'd probably agree to have it.
Unreliable test leading to biopsies - count me out!
Uncommon cancer and when I'm very low risk....count me out!
I won't put myself through unreliable and risky testing.
Personally, I don't believe any woman can give informed consent to cancer screening.
The attitude must change...we must force doctors to give us all the information.
I've joined a few health action groups...I feel so strongly about the matter.
I share your concerns...
81 - Sam
For the Australians... you may care to read this article that points out you're having smears too frequently and starting too early (American women your program is even worse) leading to lots of extra and unnecessary intervention for false positives.
The Finnish program is also discussed...
82 - Patrick M
Interesting discussion.
Actually some doctors don't think the smear has been all that successful particularly when you consider the massive over-treatment it causes in healthy women.
Death from this cancer was in decline BEFORE screening programs were in place...so other factors were at work.
Some argue better hygiene and fewer women smoking, others say more hysterectomies, others say an increased use of condoms during and following the AIDS crisis.
I've attached an article that talks about the smear and other factors that may have influenced the decline in the death rate. In the early days of screening, the over-treatment was disregarded...many women faced drastic surgery for false positives, not cancer...things like hysterectomies.
Doctors now know that the vast majority of abnormal smears are NOT cancer and treatment is less dramatic (but still can be harmful)
I think it's a positive sign that women are starting to discuss these issues.
Many women have enormous faith in the test or think they were saved by screening and so any negative discussion is ended abruptly.
I'm sure some lives have been saved, but when you consider the numbers of young women who've had cone biopsies for "cancer" or "pre-cancer" or "abnormal cells" you have to wonder... cervical cancer was never that common (and rare in young women) and is in decline - if all these women were destined to get cancer... it would have been a massive problem and that is unsupported historically or today.
It's clear most of these women have been treated "just in case" or had false positives and many will be left with damage to the cervix which may cause issues during their lives.
This huge over-treatment problem is a major negative with this test.
83 - Joanna
The dilemma of screening...tell people the truth and they might choose not to be screened, tell them very little and they're more likely to screen.
The later approach has been taken with breast and cervical screening...now with bowel and prostate screening, there are increased calls for more honesty.
I wonder why women were never afforded that consideration?
84 - Amy W
I knew this testing didn't make sense for me.
My BF and I have been together since we were 16 and neither of us has had other sexual partners.
I always heard this cancer was connected to multiple partners...the more partners, the more likely you've been exposed to HPV...given NEITHER us of had even one other partner, I knew my risk would be zero or very low anyway...
Yet doctors kept urgently insisting I have smears.
It just didn't make sense to me and now that I know it's an unreliable test and very likely to lead to biopsies, it makes me angry.
No reason to have them is bad enough, but sending me off for biopsies is too scary for words.
That is just wicked...
I've enjoyed reading many of the links...thanks for the facts everyone...shame our doctors forgot to mention all of this very important information.
85 - Dina
I've never trusted the pap smear...it's wrong so often...so I protected myself another way.
I chose to remain a virgin and selected a virgin as my partner.
I did like a guy in college...but he'd had lots of girlfriends and all I saw was risk.
I never knew the risk was so small...the way doctors talk about it...I thought it was a huge risk.
Anyway, I'm still pleased I don't have to worry about tests, false positives, false negatives and biopsies.
Give me my virgin any day!
With all of this stuff, virgins look better and better.
86 - Vivienne
If I said to men....okay, I need a swab from the inside of your penis to check for cancer.
Now we need to cut off a piece to check...the test shows some "bad cells"...
We put you through all of that...perhaps, leaving you sore, bleeding, emotional or even with damage that might cause you problems in the future.
No, you get the "all-clear"...it's fine, see you next year for more of the same.
Oh, you're not coming back...well, we'll hound you at every opportunity, scare you and if you need any medication at all, we'll refuse it until you agree...oh, and we won't listen to anything you say, you have no choice or rights and we won't give you honest information about the real risk of this cancer or the risks of testing.
How long do you think doctors would get away with that?
87 - Lena
I laugh when I read "women are offered" cervical screening.
In the States we see the words, MUST, SHOULD, WILL...
No choice, just demands and tactics to force us to agree.
No exam = no birth control pills
Informed consent...
Our doctors have never heard of it!
88 - Erica W
Lena,
Doctors are breaking the law when they make a pap smear a pre-requisite for birth control pills.
It amounts to coercion and negates consent.
The Dr would be fully liable for any harm to you...and with this test that so often produces false positives and false negatives...that's a huge gamble.
I know it's hard....doctors can be very intimidating.
I took a few photocopies of articles from medical journals - the very high number of biopsies for women under 25 for false positives...the tiny risk of cancer in that age group.
The over-detection and over-treatment in all women.
Her attitude totally changed...
I got my script with no exam.
It's unethical to make it a pre-requisite as it has nothing to do with the safe use of the BCP, but if you show the Dr you've turned your mind to the risks of testing and likely benefit for you....
I think it makes a difference...they know YOU'RE making the decision.
If you know nothing about the test (and who could blame you, we get no information) I think doctors err on the side of caution and insist on the test....assuming they know best or more than you anyway...
89 - Jenna
Reading these comments is making feel even better about my decision to not be screened.
I'm still having a hard time finding American articles supporting reduced cervical cancer screening. I have a feeling American doctors won't trust British doctors, because everyone knows America's health care system is the best(sarcasm).
And as I said in a previous post I'm looking for a new doctor. So far I haven't found one who is willing to take me as a patient unless I get pap smears. Looks like a walk-in clinic for me.
90 - Jenna
I did some math.
According to the CIA World Factbook, there are an estimated 125,701,017 women aged 15 to 65+ in the United States.
The American Cancer Society estimates 11,270 women will be diagnosed with cervical cancer in 2009.
Out of those 11,270 women approximately 4,070 will die of cervical cancer.
Which means American women will have a .008965% chance of getting cervical cancer and a .003237% chance of dying from cervical cancer.
I'm going to let the numbers speak for themselves.
91 - Kellie
Spot on....
My doctor told me smears accounted for a massive drop in the death rate from cancer.
I know they have saved a few lives, but that they ignore other factors like women who've had hysterectomies.
So, their estimate is OUT anyway...
I asked for figures....how many women?
Unless you have absolute risk figures, it means nothing...
If 6 women get cancer and after screening, 3 get cancer...the doctor can say screening resulted in a 50% reduction which sounds impressive...but the numbers are tiny.
When you look at the absolute risk of this cancer and the hugh over-detection and over-treatment problem...that's all I needed to hear....
I just wish doctors were honest and told women that abnormal results are so common you have very little to fear...the chance that it's cancer is very low....
All of my friends have had abnormal results...I see their terror and try to calm them down.
Women are just pushed into screening with no information and that's cruel...at least tell them what they'll almost certainly face with smears...and it would be fair to tell them their absolute risk while they're at it.
I know that will never happen.
Yes, I'm disillusioned with the medical profession.
Have any of you read the new research coming out about the dangers of mammograms.
It's terriying!
What are these people trying to do to us?
92 - Sam
Jenna,
If you had the best health care system in the world, you'd have the lowest rates of cancer.
You don't...not even close...but you have the highest number of tests and biopsies because you over-screen women. (and men)
Finland has the lowest rates of cervical cancer in the world, they have 5-7 tests in their lifetime and 55% of women will have a colposcopy...US women have 50+ and 95% of you will have a colposcopy in your lifetime. (the vast majority of these women won't have cancer)
Very low risk women are given full facts and some choose no screening or very infrequent screening.
The attitude is totally different in countries like Finland and the Netherlands...protecting your health is the doctor's first priority.
Prostitutes follow these same guidelines because doctors know more frequent or earlier smears will not benefit them...in the States, you test virgins, teenagers and young women and far too often ensuring you harm as many women as possible.
Over-screening is harmful to the vast majority of women for virtually no benefit.
Low risk women are most unlikely to benefit from smears, but still very likely to face biopsies for a false positive.
Women should know what they're agreeing to....
93 - Bernice
I hated the idea of this test so much, I went looking for information.
When I saw the tiny number of women helped by screening (high risk women...roughly 0.66% of women - see DeMay article) and the HUGE number of women put through the awful stress and humiliation of a colposcopy (95% of women - same article) it was enough for me.
I have zero fear about this cancer.
If I'm unlucky enough to get this cancer or I'm struck by lightning, so be it...but I'll always weigh up the risks and likely benefit for me before agreeing to cancer screening.
The stress caused by abnormal results is acute...
I think its plain wrong of doctors to frighten women into testing making out this cancer is a huge threat and that this is a reliable, no-risk test.
These are bald faced lies and women go into testing or are pressured into or "required" to have testing and are totally unprepared for the consequences.
The only reason doctors claim this testing as a huge success story is because a few women are helped...and they think its fine to ignore all the women who are left distressed, in pain, humiliated or with continuing health problems after biopsies...this collateral damage is fine as long as we save a few lives.
If my health is on the line, it will be MY decision and my decision alone, whether I choose to test and if so, how often...
My doctor tried to deny me birth control...
The community legal service sent a letter and I collected my script the next day.
Doctors cannot force you to have this test or make it a pre-requisite for birth control pills...
I was told by an attorney that it can't be supported medically, ethically or legally.
She said its a shame more women don't stand up for their rights.
94 - Jenna
Sam, I think you may have misunderstood me. I agree with you that America's health care system is horrible and cancer screening in general is way over done and causes more harm than good.
The point I was trying to make is that despite over screening for cervical cancer the chances of getting or dying from it are extremely small. I don't think screening every woman would do any good since pap tests are far from perfect.
The American health care system, I feel, is focused more on making a profit than actually making people healthy. And forcing women into getting a pap is a crime against humanity especially since it causes so much fear, pain, and anxiety because of so many false positives.
95 - India
In the States, it comes down to ONE thing...legal liability.
Doctors know its unlikely you'll die from a false positive and biopsies. It's a safer approach for them.
Your health may be compromised, but you're unlikely to die and if you sue, they can hide behind the mass recommendations.
If they depart from those recommendations, even when they're bad, they risk getting sued...
If YOU make a firm decision and go in armed with facts, many doctors will listen.
Of course, making screening part of a birth control consult. is a bad, unnecessary and unethical practice that's become a gold standard.
It will only change when women start to challenge it in large numbers.
You need to go higher...let their professional organizations know their members are NOT following their recommendations...because no prof. org. endorses this requirement.
Gyn exams and pap smears are NOT necessary for birth control.
Gyn exams IMO, are not necessary at all, ever, for any healthy woman.
Pap smears...up to each woman to look at her risk and make her own decision.
I think women should be given options...depending on their risk profile.
Low risk and high risk should not be screened the same way....it's unfair to the low risk women.
I offered to sign a waiver...sadly, that's necessary in this country.
I don't have breast or cervical screening.
I studied preventative medicine at University. (part of medical research)
My decision is based on MY risk factors...low risk for cervical cancer (which is uncommon anyway) and like other posters, I don't wish to face abnormal smears and biopsies for false positive results.
Breast screening (greater risk)...but the risks of screening are just too great for me.
I do worry a bit about breast cancer, but screening is not the answer for me.
I've made an appointment with a specialist to discuss other options...be watchful for symptoms, ultrasounds and/or a professional breast exam biannually etc
I refused breast exams until I turned 40 or so...following the research that strongly suggested this practice led to lots of biopsies.
In many countries, doctors are told NOT to routinely examine the breasts of women under 40 or 45 because of the risk of biopsies for benign things.
If you challenge your Doctor and ask why it's being done...that's usually enough...I think some doctors go into auto-pilot and don't stop and think why they're doing something.
There is an article that covers this...called "Dr, hands off my chest"...I'll post it for your reference.
I'll still be making my own enquiries about breast exams and/or ultrasounds...in the end, it's my life and health at stake.
96 - Mellie P
I agree with you, Jenna
Money and fear of being sued are the big ones.
I'm a very private person and all of this scares the life out of me.
I was relieved to read an article a few years ago in Spectrum, that pointed out all the above information.
Very low risk of this cancer...even for very high risk women, unreliable test and all the nasty biopsy stuff.
I also really dislike doctors and hospitals...I'd be a basket case if I had to go through the biopsy business.
I'll take my chances...a tiny one with this cancer and a bigger risk with other cancers...if you look at lifetime risk, this cancer is right down the bottom...lung cancer is a much bigger risk.
I'll do what I can to stay healthy and get on with life...I'm not having bits cut off me every year "just to be sure"...I don't do that for any other cancer, so why would I do it for a rare cancer.
97 - Jenna
Mellie, I agree with you on the just to be sure part. No one ever told me the chances of having a false positive and the consequences of it. I actually believed that cervical cancer was extremely common and when I saw the real numbers it blew me away.
We here all the time about how many lives have been saved and how if you don't get a pap that most certainly you will get cancer. What is being done to women is a crime --especially denying birth control to women who refuse paps. Men would never tolerate that, so why do we have to?
Doctors are also starting to push the PSA test for men, yet even a simple google search for the CSA test comes up as almost nothing. Even when I go to a doctor for anything they try to push me to get a pap smear. And I'm in an age group where a false positive is much more likely to happen than actually having cancer.
But, once again, no one ever told me that.
98 - Bethany
Jenna,
This aggressive promotion of the test is about money and politics in Australia and the UK.
Maybe that is also the case in your country.
The government actually pays doctors to screen 85% of their patients.
They also get bonuses when they screen new women and underscreened women.
Because this is one of the rarer cancers...doctors KNEW from the start, they'd have to screen large numbers of women to reach the few that have a real problem. They also knew the test was inaccurate and so lots of women would get incorrect test results and end up having biopsies for false positives.
THEY knew all of that and they chose not to tell us.
In fact, I think they did everything they could to deceive and frighten us...and many of us have ended up with damage to our health...as a result of trusting our doctors.
One of my friends has been through two biopsy procedures and she's only 26...
In the Netherlands, she wouldn't be having screening yet...to avoid this very situation.
Doctors have to justify the huge sums spent on screening...they have to show a reduction in the death rate. No one asks them about the number of women who face biopsies for false positives.
So, politics and money are at work in my country.
It infuriates me that we're treated this way...and its not a blood test...its the nastiest exam in the book as far as I'm concerned...
Fortunately, I have a Dutch cousin and she told me about their system...totally different.
No smears at all before 30 and then only every 5 years.
I'm visiting my father's family in October and plan to speak to my cousin's doctor while I'm in Amsterdam.
My cousin tells me the approach is totally different. Her Dr will assess my risk and tell me straight...my chances of benefiting from smears and the risks.
I can't get that sort of information from a doctor in this country...you're just another test on the way to their target.
At least we're not refused contraception, but you do have to be firm.
Because I can say I'm aware of the Dutch system, they leave me alone.
Others are not so lucky...doctors can be very persuasive and intimidating.
99 - F. McIntyre
All of these "requirements" ended my relationship.
I couldn't face any more of it and it started to affect my body image.
I felt dirty (is the only word that really describes it) after a colposcopy and the whole thing turned me off sex.
I just don't want to live like that any more.
My thought process now is....pelvic, paps, pills, sex, pap, repeat pap, colposcopy and biopsy, pain, major embarrassment, bleeding, pap, pelvic, pills, sex...scared of the next colposcopy.
One of my friends has already had two and she's only 25.
This is what sex means for me these days...lots of negatives with one positive in there somewhere...take out the positive and I can avoid all the negatives.
Men just see sex...
My boyfriend used condoms for a year, but then became frustrated by them and my changed attitude.
We tried other things from the pharmacy...but clearly he just wanted me on birth control.
I think men just expect us to take birth control for years on end and they don't even have to think about it, just dump the responsibility on us.
They can get condoms easily, no side effects, no doctors exams and tests...a LOT easier than getting birth control pills.
Most men have no idea what doctors expect from us before they'll give us pills.
I doubt many men would go through that...
There is no doubt my colposcopy was caused by over-screening.
It makes me furious to think I've endured these disgusting things and more for years...if I lived in Amsterdam, Finland or another country, I would have been spared all of this...I'd still be too young for testing.
Lots of damage and heartache for nothing.
I won't be conned again, now that I know the risk of this cancer, I doubt I'll ever agree to testing again.
My Dr also told me this cancer was VERY COMMON and that pap smears were THE most important thing in women's health and therefore doctors needed to insist on them.
Now to find, none of that is true.
The British Medical Journal doesn't lie...article after article that says something totally different.
It almost feels like a conspiracy and we're the victims.
PP gave me a hard time...
I asked about the HOPE plan, but got nowhere.
I don't think all PP surgeries offer HOPE...so be careful...call first.
100 - June, Davis, California
Many women have had bad outcomes as a result of this supposedly "optional" testing.
Most women are totally unaware of the real facts...I'd never heard of a false positive until my friends started to have colposcopies.
I'm very grateful I have been excluded from all of this testing and treatment.
Everyone seems to be pre-cancerous when they have this testing.
One group is never mentioned by our Doctors.
Dr's treat ALL women the same way...very low risk/low risk (no one will say no risk) are tested with high risk...that doesn't make sense and is likely to harm low risk women.
My husband and I met as teenagers and lost our virginity to each other when we were 20.
I knew this cancer was caused by HPV which is sexually transmitted...yet all of our doctors kept pushing me into smears.
I didn't want to have smears unless there was a risk of this cancer, and a risk large enough to concern me.
I couldn't get an answer from any of our doctors.
I see a few of you have mentioned the Netherlands and Finland.
I also have Dutch family...and I was able to get an answer very quickly from a Dutch Dr.
You have to catch HPV from someone....virgins can't give HPV to someone. (a virgin means no intercourse and no genital contact with another person)
I know some say you can catch it from used towels, bedding etc...but my reading and the advice I've received says that's not the case...I haven't shared a bathroom with other people or clothing anyway.
The Dutch Dr told me smears are not helpful for women like me...AND, if I had smears every 5 years, they'd STILL be a fairly high risk I'd have a false positive.
I think the figure mentioned was about a 50% risk over the testing period of 30 years....from age 30 to 60.
None of our doctors mentioned any of that...and the testing they were suggesting was annual...which made a false positive VERY LIKELY...94-97% chance.
Women should be given this information.
I was just lucky that I had access to a Dutch Dr and was concerned enough to go looking for another opinion...otherwise, I'd now be up to 20 or more tests and probably a colposcopy.
I don't like the sound of that...
I'd recommed any woman unsure of her risk and wanting a balanced opinion, seek advice from an overseas doctor...perhaps, even write to the screening authority in the Netherlands or Finland.
The UK recently declined to screen women younger than 25...it was considered unethical as they'd harm far too many women.
It was mentioned a VERY HIGH % of smears in young women lead to biopsies. (false positives) and that the test is very bad at picking up that very rare case of cancer in that age group anyway.
I can't understand why medicine continues to do this to women.
We're all entitled to honest information so we can protect our health.
Trusting our doctors is a very bad idea and likely to lead to health problems.
101 - NuttyGirl
Hello. I made my comments on this board back in May. Since then I have gone to the doctor for my first physical in several years. I was determined NOT to get a pap. I am at extremely low risk of cervical cancer.
My main reason for going for a checkup are recurring pains in my chest when I am laying down, sometimes they wake me up. Sooo I forced myself to make an appt and went in for bloodwork. The next day was my appt and my nice young female doctor treated me like a leper because I would not do a pap smear.
I told her all the risk factors and why I was so low risk. ( I did have pap smears when I first got married 25 years ago and on birth control)
I did finally agree to a pelvic exam which now I don't know why.
But anyway I KEPT trying to bring the conversation back to the intermittent pains and cramps in my left side and my concerns.
But she was so obsessed and freaked out that I would not do the pap smear that she would not even talk about my heart pain/side pain.
I am only 48 so she probably thought I was low risk for any heart problems.... but I am lazy and I eat poorly. I am in good health and I look young so I could get no help for my heart pain. Adding to this is the fact that I was a little afraid it might be something and really did not want to address it sooooo .... after 3 times mentioning my pains. I just let it drop and left with her saying "please think about getting a pap smear and mammogram"
I was thinking I AM PROBABLY MORE AT RISK OF DYING OF A HEART PROBLEM AND THEY WONT EVEN LOOK AT THAT.
ANYWAY,,,,I laughingly told my husband that if I die of a heart attack that he should haul my dead body up there and tell that obnoxious doctor that I now give her permission to do all the freaking pap smears she wants to.
I cannot believe it. Talk about Pap Smear Happy!
102 - Jenna
NuttyGirl, I sympathize. Here's my typical "going to the doctor's in America" story.
A few years ago I had an ear infection which left some fluid behind my ear drum. I waited a few months before I went back to the doctor.
He came in and asked if I was there for a pap. I'm, like, no I told the nurse I was here for my ear. And he said I should have one and he could get a female doctor for me. After I yelled at him he finally looked at my ear and had the nurse flush it out with tap water.
A week later my ear hurt like all hell so I had to go back. He walks in and *SURPRISE* tried to push a pap on me. I yelled, again, and got an antibiotic.
Another week goes by and the infection still hadn't cleared up and I was in horrible pain. He gave me a referral to an ear, nose and throat doctor and then said I could still have that pap. My ear was so bad I couldn't even close my jaw without screaming in pain and this jerk was still trying to get me to have a pap.
Long story short, I ended up having 5 ear infections in a row with one ear canal closed up for a week and a half because of that doctors carelessness. Hundreds of dollars, time, and school missed because he was more focused on me having a pap rather than fixing was was really wrong ... and making the original problem a thousand times worse.
The kicker is when I went two weeks after the last infection cleared up I had to go back to make sure I everything *WITH MY EARS* was okay. After he recommended a hearing test he then said he'd get a female doctor to do that pap. I walked out without paying my copay.
Oh, and I do have permanent damage to both my ears. Thanks doc.
103 - Diana B, Australia
Jenna,
I think I'd report that doctor for harassment.
You should be able to see a Dr without that subject dominating the conversation.
YOU were concerned about your ears...end of story...THAT should be their focus.
You are seeing a Dr about your ears.
I'm a solicitor...if a client arrives and wishes to discuss their Will, I don't focus on another issue.
It's unprofessional and makes no sense.
What is wrong with these people?
Heart diesease is the No. 1 killer of women...
NuttyGirl, it really makes me sad and disillusioned when a Dr will ignore actual symptoms and concentrate on an unreliable test for a fairly rare cancer.
I guess because you agreed to the pelvic...she just assumed you'd agree to everything.
Sorry, I make no criticism...but I just don't understand all this pelvic exam business.
I'm 49 and have never had a pelvic exam.
My Dr has never even mentioned it to me.
I don't have smears...we had that discussion many years ago and my "informed decision" is duly noted in my file. (Why?...I'm low risk and I won't agree to unreliable tests that lead to risky and confronting diagnostic tests or exams)
It never even comes up these days.
I've also decided not to have mammograms. (I don't like the risks that have been linked to testing)
I have a breast exam every couple of years, but that only started about 6 years ago.
I really don't worry about seeing my Dr.
If I had to face constant hounding about pap smears and my ACTUAL symptoms being disregarded, I think I'd probably report the Dr to the surgery and to their medical association. I think that is totally unacceptable.
Women have every right to see their doctor without being harassed about smears all the time.
NuttyGirl - I don't know the statistics...but I'm sure more women in our age group have heart issues than cervical cancer.
My guess would be...many more...cervical cancer only affects small numbers of women.
I think it's something like one in 190 or thereabouts...
Heart disease would be a very high figure.
I've even heard doctors say young women are most at risk of cervical cancer.
That's rubbish...youg women are so low risk they're not even tested in many countries. It's dishonest scare-mongering.
I suppose they think if women get "used" to having smears from 20 or so, they'll keep it up throughout their life.
I don't think there is ever any excuse to deceive or mislead people.
Particularly, when it seems testing young women is very risky indeed and very likely to lead to biopsies.
The same applies to all women, but I hear that young women face very high risks.
I really believe we need to be forthright and follow-up...
I'd really encourage all women who've had unsatisfactory experiences to send a letter to the Dr and Clinic...calmly explaining your position.
The end result of harassment is that some women will choose to avoid doctors or they'll go elsewhere.
Is that what Doctors really want?
Harass women about a rare cancer, so they ignore symptoms for common problems or leave their Clinic.
104 - C Johnson
It actually frightens me that most of us have no idea of the truth about this testing.
I didn't....
I'd be so mad if I found out about the very low risk of this cancer or the unreliability of this test after years of going through with this really awful test or going through something even worse...I looked up colposcopy on the internet...THAT looks just terrifying.
Why are women treated like this...like our dignity and privacy doesn't matter?
Thank you for opening my eyes...I'll be doing lots of reading before I let any Dr push me into this testing.
Women are really misled about all of this...just pushed into testing with no information.
Some of my friends think this test is for cancer of your uterus, ovaries and everything else.
They have no idea its just for cervical cancer and that seems pretty rare.
105 - Lyn
Are US doctors also paid to reach high screening targets?
Or, do they get a bonus payment for each pap smear?
All of this makes me think money is behind it.
Doctors know this cancer is not a big threat...especially to young women, and they know the test is far from perfect.
The reaction is so OVER THE TOP, there must be something behind it.
In the UK and Australia, it's definitely money.
Although, I don't think Australian doctors were ever as unethical as ours...
Some of our doctors are guilty of really disgraceful conduct...action has been taken and things have improved.
When you pay doctors to screen as many women as possible...it always ends up badly for the patient.
Forcing a vaginal exam is totally unacceptable...unless the woman feels it was her idea, it can be a very bad experience.
106 - zingzing
i'm thinking about using "unnecessary pap smears" as a band name.
107 - Irene Wagner
Banned name.
108 - zingzing
no, band name.
109 - Irene Wagner
Right, no banned names.
110 - Cindy
lol :-)
111 - Elizabeth
US doctors are under pressure to stop over screening and harming women.
It looks like the start age will be raised to 21 and virgins excluded (yes, that's how ridiculous some of your doctors are...screening virgins!)
21 is still far too young and sends lots of young women straight to colposcopy, which is unethical.
Hopefully, your doctors will feel more and more uncomfortable with the worlds gaze on them...your over-screening, over-examining and over-treating of women is alarming and WAY out of line with other developed countries.
The fact one in three of your women have had a hysterectomy is sufficent reason to call for an investigation.
112 - Susanne
Interesting article from ABC News about FDA panel approving the administration of the HPV vaccine to boys and young men. I wonder how much this will be promoted and/or "required" by the medical community.
113 - Karen
Hi, I'm a doctor, and I think many of you have a valid point that if you have never been sexually active that pap smears may be unnecessary. It is true that HPV causes the majority of cases, but smoking, family history, are also risk factors. If, however, you have ever been sexually active screening is a good idea. 14000 woman are diagnosed with cervical cancer each year, and 4000 woman die each year from cervical cancer. In the 1950s, the death. If a precancerous lesion is found, it can be removed easily with freezing or cutting the lesion out (an in office procedure). The survival rate for woman with precancerous lesions is 100%, and low grade cancers is 90%.
I've seen many misconceptions in these blogs and I encourage you all to consider speaking to doctor before you decide to stop annual screening.
Medicine unfortunatly performs many procedures that people may find appealing. For example, colonoscopy, which is recommended starting at age 45 or 50 depending on risk factors. As an emergency room physician I cannot tell you how many people 60y/o men and woman I diagnosed with sever metastatic colon cancer who didn't have a colonscopy at age 50. And I know numerous people who had cancerous polpys found at age 50, which were removed, and now they are still alive and well. The point is that screening tests exist to prevent people from getting an incurable illness, like advanced colon cancer, or cervical cancer. My advice, these tests exist for your benefit, they save lives, and should be done. If you've ever been sexually active, for god sake get screened. It's not that bad, really.
114 - Susanne
I have read the comments policy and I certainly hope that what I am about to say does not violate that policy. I mean no disrespect, but I am puzzled about the last post. I do not know if the poster calling herself Karen is just not a very good typist or if perhaps English is not her first language, but the message she posted above does not read quite right. There are some grammatical errors and some odd wording, which makes me question whether she really is the physician she claims to be.
And I have to wonder if her final comment, "It's not that bad, really," was said to get a rise out of people. It is just exactly the kind of comment that angers many of us on here, I think.
115 - Elizabeth
Whether she's a Dr or not, only I can say whether it's a good idea to get screened.
An unreliable test for an uncommon cancer and my very low risk profile...it is far more likely that I'd face biopsies for a false positive than have cancer discovered...
I'm not happy to have a biopsy when there is very little likelihood of cancer.
If I were high risk, I might choose to follow the Finnish program.
I would NEVER agree to annual smears...and NEVER agree to smears before I was 25 or 30...the evidence from the UK is very clear...over-screening carries significant risks to your health and screening too early leads to biopsies in a high number of cases.
They are facts...
Sadly, speaking to a doctor is not all that helpful, unless it's a Dutch or Finnish Dr...doctors in the UK and Australia get paid handsomely to achieve high screening targets so there are many examples of unethical conduct...they have a conflict of interest.
US doctors have a reputation for shockingly negligent over-screening and demanding unnecessary and excessive exams leading to significant harm to women.
The facts can't be denied...scary stories have ZERO effect when you have the facts.
Annual smear are a very bad idea...do your reading and protect yourselves.
116 - Just an asian girl
I've never had an examination done and only went to have my parts looked at when I found a white spot on it. I'm a virgin by the way. The white spot was just due to the rubbing of my jeans, but when I went to have that looked at, the female gyno made it so embarrassing. Her face looked like she has never seen a young girl with a large inner labia before. She brought another female gyno in and made a spectacle. It wasn't for the purpose of finding out what's wrong it was more of wow look at that vulva. I was insulted and felt like I should have never went there in the first place. I was sixteen. Now I am 19 but remembering back makes me cringe and not want to have a pelvic examination. I am still not sexually active and will remain so until well into my twenties. I will stay abstinent until my marriage which by the way is not happening anytime soon.
117 - Just an asian girl
After the humiliation of that, I felt uncomfortable to go even further. They say you have to get one even if you are at little to no risk of such diseases. The procedure seems so evasive and even more humiliating and they tell you to accept because everyone goes through with it. Maybe I am not ready to accept, it just boggles my mind. Also, doesn't history of cancers from your family come into play at all? With that tallied in, if you don't have a history of cancer of the reproductive system or breast cancer. If you remain a virgin, why do you have to get it done at no later than 21? It makes me fearful of gynos if they are helping or just plain harming women.
118 - Andrea
I am so glad to see that there are other women who have similar beliefs on this subject as I do. I do live in the USA and have never and will never get a pap smear or pelvic exam. To me it's the same thing as being molested or raped. I hear and read all the time them say that the doctors are examining you in a "clinical" or "professional" way. Frankly, I don't give a sh#!@ what their point of view is. It's my body and only my point of view is the only view that counts!! Back when I was 9 I was forced into a genital exam when I wasn't even having any issues. Nothing was explained to me so I wasn't given any warning or the opportunity to say "No". Doc removed my underwear leaving me completely naked while my mother just sat there watching and then lied to me later saying he was checking my hips. I have since confronted her about it and she just comes up with lame excuses. Sorry, but I wasn't having any problems with my hips and was actually very much accelling in sports...and checking your hips does not include the doctor removing underwear and spreading your legs. I was horrified and confused and I decided on that day that I would never have a baby, would never let another doctor access to that part of my body again, and could never trust my mother again (hell of thing for a 9 year old to go through and make decisions about). I have no desire to "get over it" and when it comes to this subject all the doctors can go to hell! They either come up with noninvasive tests, home kits you can do yourself in the privacy of a bathroom, or they will just have to find someone else to humiliate and violate.
119 - NuttyGirl
Hi Asian Girl,
I too had a weird first experience when I had my first "spread your legs for the doctor ordeal" I went to a female doctor and I was 23. I was getting married in a few months and needed birth control so I HAD to get a pap smear. (this was 25 years ago)
I was laying there on the table and said "I can't believe I am going to be violated " before I even ever have intercourse with my husband. This sucks.
I really wasn't scared but I was mad this was being done to me.
My female doctor was like YOU ARE A VIRGIN? (apparently I was the last surviving 23 year old virgin in 1984...)
Then she gets on the INTERCOM and request 2 nurses to assist her saying over the intercom because I am a virgin.
At the time I was very shy and was disgusted. Now this kind of scared me because... why does she need 2 more assistants?
Anyway with re-enforcements (one hold my hand) She tries but fails to give me my first pap smear and told me to come back after my honeymoon.
Creepy.
I am so glad I found this blog.
120 - NuttyGirl
Andrea,
That is very strange thing to do to a 9 year old. Did your mom suspect someone of sexual abuse and was looking for signs of sexual abuse?
Why else would they do this?
Unless you had a yeast infection or something.
I am sorry this happened to you without any explanations, which you deserve no matter what it is.
Mothers especially can sometimes be so clueless about how long awful words or actions stick with us in our life.
Your mother not just telling you why makes it worse.
121 - Lucy H, Brisbane
I'm so sorry to read about these very upsetting experiences. The medical profession should hang their heads in shame.
One of my friends was left so upset after a colposcopy that she needed counselling. She didn't have cancer...it sounds like it was a "false positive".
It happened in the days when there were very few female gynaecologists in Australia.
She faced a male gynaecologist and a male assistant...with a female nurse in the room.
The men made a little joke as she positioned herself spread-eagle...she says something died inside her that day and she has never recovered...she felt dirty, unimportant and humiliated.
When she found out her risk of this cancer was very, very low and the high chance of a false positive, she was really upset.
She has refused pap smears ever since.
There are more female doctors around today, but the trauma she experienced will stay with her forever.
Being a woman doesn't mean constant violations of our bodies.
Our grandmothers didn't have these tests and lived long and happy lives.
We're supposed to believe this cancer is now a huge threat.
In my opinion, it's doctors that represent the huge threat to our happiness and peace of mind.
Until they invent something reliable and non-invasive, they can forget about it.
I'll live with the small risk of cervical cancer, the fairly high risk of lung cancer (even though I've never smoked...it kills one in 23 people), the small risk of brain cancer...
When you look at all the cancers, cervical cancer is way down the list (and always was)...MOST other cancers are a bigger threat, but we never hear about them...(aside from breast cancer)
Also, almost as many men die from testicular cancer as women from cervical cancer...yet you rarely hear about testicular cancer. Why not pressure all men to submit to testing and pay doctors per exam? Withhold their meds until they've had an exam.
No, THAT would be unacceptable.
Why are these cancers handled so differently...I've even heard doctors are told not to scare men about testicular cancer because it's so rare...yet they never shut up and seem to enjoy scaring women about cervical cancer, another rare disease.
I think every woman harmed by this testing should sue...if you've had a colposcopy for a false positive and were not told of the risks prior to testing or were forced to have the test to get contraception, see a lawyer.
You must have an open and shut case.
Doctors are not above the law.
122 - Andrea
NuttyGirl,
Fortunately I have never been molested, not by anyone other than a doctor anyway. It was just an annual physical. I was perfectly healthy, no symptoms at all in that area or any other area of my body. There are bad doctors out there and sometimes I think he was having a bit of fun for himself. My mother says she doesn't remember but at the same time says the doctor told her he was checking my hips. I told her that was a lie and that in any case I should have been given warning and an opprotunity to say "No", also whether or not I wanted an audience, in this case my mother watching as well. She aggreed with me when I confornted her on being able to say "No" that day but I believe only because I am an adult now confronting her. She seemed to remember though, me having a major fit (screaming and crying) the next time I had a physical and absolutely refused to remove my pants nevermind my underwear, but supposedly fails to remember that she knew the reason why, when she told the doctor she thought it was because the other doctor removed my underwear etc. I, on the other hand, remember it all like it was yesterday.
Apparently she didn't think I had dignity rights back then because she could have stopped the doctor when he was removing my underwear. Honestly, I believe the doctor told her what he was going to do but they never told me anything because they knew I wouldn't like it and say no. So they just sprung it on me. She even admitts she knew I was a sensitive kid and didn't like doctors...well if that's so then she knew I would give them problems and refuse the exam if given the opportunity. Needless to say I refused to that doctor again and never let another doctor go near that area of my body.
A child of 9 is no longer a baby and should have the right to say "no" especially if they are not having any problems and are not comfortable with that type of exam but the medical community treats children like subhumans. They have no rights because "they are just children" or they are too young/or stupid that they don't realize what is going on and therefore won't feel violated. Adults totally underestimate kids...Kids do feel violated which is one major reason why young children cry a lot when they go to the doctor. I remember specifically even at age 4 hating doctors and feeling violated every time I went to the doctor, and crying, like a lot of young children do before the doctor even touched me, and actually feeling violated when a nurse shoved a thermometer up my rectum that day at the age of 4.
Though as adults we are annoyingly pressured/sometimes bullyed to have these types of exams, we can still say no. Children unfortunately seem to have no rights, even when there is nothing wrong. If I ever had a child I would allow one genital exam while they were a baby and no more (unless she/he had problems in that area) until the child was able to tell us "no" or "yes". Since it's traumatic enough for adults, I would never put my child through it. It's their body.
123 - Jackie T, Melbourne, Australia
Andrea,
I have a bit of a medical phobia and I think it started when I was four years old.
I severed my little finger in an old clothes line...this was in 1962 and micro-plastic surgery was a fairly new field.
They decided to reattach my finger which was risky as it could have meant gangrene setting in and losing my hand.
My "case" was of interest to lots of medical students and other specialists, all male...
This was also in the days when your parents couldn't stay with you in hospital...so I was afraid and thought I'd been abandoned...
After my surgery, the nurse removed all my clothing, including my pants and I was asked to stand next to the bed...as male medical students and doctors entered the room and encircled me.
I remember staring at the floor, looking at all the pairs of shoes, terrified, vulnerable and embarrassed...when one older man reached out to touch me, I literally went berserk...kicked, scratched and screamed...until they left the room leaving me clinging to the nurse.
I have been afraid of doctors ever since.
Fortunately I have good health and rejected pap smears - I was initially concerned about that, but after doing some reading...saw the risk and my risk of this cancer was extremely low...
I would not be happy to have a biopsy for a false positive result and would not put myself in that position.
I don't have mammograms because I'm concerned about the risks.
I've had one gyn exam in my life and had to shop around until I found an understanding female doctor.
I don't see male doctors for anything...I feel anxious in their company.
Fortunately, I live in a country where annual or routine gyn exams are not recommended...I would never have agreed to them anyway...common sense tells me they are unnecessary in a healthy woman.
I think enormous damage can be done in childhood.
I was reading on another forum about a woman who said she was traumatized after genital exams as a child...apparently the doctor was checking her for worms.
It seems American doctors are thorough to be point of being excessive and abusive...they end up putting their patients through far more than necessary and don't seem to appreciate the damage they do in the process.
I've enjoyed reading the discussion here...and to know others also question the "system".
124 - Dana
I have been having pap smears since I was 16. I am a virgin, but when I was 10 some ladies had to touch my private area because I was in an accident and they were trying to help the bleeding.
Everything I read on the net is inconclusive. It seems that some virgins do have hpv and I wonder where they get it, maybe something like that happened to them and they got it from someone touching them (not in a sexual way) but maybe a doctor exam or something. I hate these exams but to me to protect myself from the risk I will do it. If someone could give me proof that I can't get it from that way but no one does they just say probably then I think i should get tested.
I know i'm not sexually active but I was touched.
Does anyone have any information about this?
125 - Dana
The reason I am asking you all is because this is the only sight i have seen that doesn't make everything such a scary catastrophe.