Avoiding Smear Test

Tests and investigations
1

I am currently dodging my Doctors about my Smear Test- saying I keep forgetting or I will try to book one etc. At the end of every appointment I get the speech on Smear Tests - even having one doctor talk over me saying I didn't want one. 

I have had previous examinations due to problems with bleeding and periods but they were uncomfortable, painful and traumatic bringing up a lot of horrible memories and feelings. I almost passed out after the last examination. 

I'm not having any abnormal symptoms and am not sexually active for many of the same reasons. 

I wish the Doctors would stop harrassing and try to empathise a bit more with their patients. 

I didn't think I needed to have one if I'm not 'active' but again not something that I want to go over with my militant doctors! Just leave me alone please! 

2

Lauren,

ALL cancer screening, including pap testing, is elective, your choice.

If you don't want to have pap testing, that's fine, it's up to you, and you don't need to explain yourself to a doctor or provide an "excuse". Informed consent is a legal and ethical requirement for all cancer screening.

These doctors have stepped over the line. I'd send them a letter stating you're aware that pap testing is elective and that informed consent is required, you find it unacceptable that you're pressured at every consult.  I'd also say make the point that you're entitled to see a doctor without being lectured and pressured about pap testing. Ask them to mark your file, you don't wish to discuss the matter any further.

You could also, mention the Medical Council, that would make them stop and change their conduct. The MC has made it clear that all cancer screening requires informed consent. If it persists, you could write to the MC, they'd have to take action, they've been vocal about informed consent over the last few years.

It should be a scandal that women are pressured into "elective" cancer screening, it's a shame more women don't report this conduct, and challenge the doctor, but most women don't complain, many give in to the pressure, so doctors keep doing it. I think some doctors know the consult room can be intimidating for some women, and they're in a position of power, that can change quickly when you know your rights. 

GPs get target payments for pap testing, I consider this unethical, at the very least they should mention this potential conflict of interest to women. GPs may also, get lump sum payments if they get a certain % of women screened, this is IMO, partly why so many doctors seem to focus on this test. Some doctors put the target and payments ahead of individual choice and informed consent, that's unacceptable.

Anyway, you can either send a letter asking them to stop hassling you and/or you could report their conduct. You can also, complete opt-out forms so you don't keep getting letters/reminders about testing, but you'll have to keep doing that, as the hassling starts again in 4 or 5 years time. (so I hear)

Australia is thinking of introducing a UK style call and recall program, I will be speaking to my solicitor if my decision to opt out permanently is not respected. It irks me that I have to opt out of something I didn't join in the first place! 

I made it clear to my GP many years ago that I'd made an informed decision not to screen. (decades ago) More recently, I also, declined mammograms. (when I turned 50)

If a doctor didn't listen to me, talked over the top of me, lectured me, didn't accept or respect my screening decisions, I'd be changing my doctor. It's important to find a doctor who'll work with you and respect your decisions.

I've never had a pap test, initially it was the numbers I didn't like, I'm not prepared to accept much risk at all for a rare event, (cervical cancer) false positives, excess biopsies and over-treament are fairly common risks with this testing. 77% is the lifetime risk of colposcopy and at least a biopsy here, while the lifetime risk of cc is less than 1% (0.65%)

Now I understand that I'd be HPV- (like most women) and cannot benefit from pap testing.

You might be interested to hear the Dutch will scrap population pap testing,  they'll offer instead 5 HPV primary tests, or HPV self testing, at ages 30, 35, 40, 50 and 60 and ONLY the roughly 5% who are HPV+ will be offered a 5 yearly pap test. MOST women are HPV- and cannot benefit from pap testing.

Also, note the Dutch do not offer HPV testing before age 30 and they have never offered pap testing to those under 30, they protect their young women from this testing. (so do the Finns) About 40% of women under 30 are HPV+ transient and harmless infections that clear in a year or two, by age 30 that number drops to about 5%. Also, no country in the world has shown a benefit pap testing those under 30, the same very rare cases tend to occur whether you pap test or not, but false positives are fairly common - over-treatment can damage the cervix and lead to premature babies, the need for c-sections etc. 

Stand firm and remember, pap testing, bowel screening and mammograms are "elective" screening tests that legally and ethically require your informed consent, they are a choice, nothing more.

3

You do not have to have these examinations, I hadn't had one for 7 years and now after a hysterctomy inc cervix removal I don't have to. biggrin

4

Lauren im now 64, had my last smear test when i was 59 and it was awfull, i said never again i menat it too, very painfull and had problems with urethra afterwards where she had pressed so hard with that metal spectrum up against my ooeneing to the bladder, i was grasping the couch with both hands, she said she couldnt find my cervix? prior to this i have never experienced such discomfort before, apparently its worse after the menapause.  doenst sound to me you need one  but after the death of Jade Goody we do need to take note of our body changes, she had smear tests and all the symptoms and nothing done about it, how sad.

Jade Goody's death was preventable and a result of 'incompetence and neglect' by the NHS, a leading doctor and Harley Street consultant claimed today.

One year after the 27-year-old died on March 22, Dr Ann Coxon said Goody's symptoms - which included heavy and irregular bleeding, pain and abnormal smear tests - were 'glaringly obvious'.

The former NHS doctor claimed the reality television star had a tangerine-sized tumour which medical experts failed to spot.

This is probably why so many doctors are pushing to have these tests done.

Sue

 

5

Thank You for your information there were of lot of things I didn't realise! I will look into the Medical Council and opting out to stop them harrasing me.

6

I agree with the ladies here. The test is purely optional, but GP's are given incentive payments to pressurise women into screening, so they bully and coerce at every opportunity, getting the biggest payments if they can reach an 80% target of screening compliance. You might remind your doctor that under the terms of the Data Protection Act 1998 and the Human Rights Act 2000, you have the right to opt out of screening, and the NHS must respect your decision and not send you any more reminder letters or pester you any more. You have the right to opt back into the programme any time you may wish to return to screening. It is your call. It is worth checking your surgery's website. Some enlightened GP's have put on their websites that screening is an option and they also have uploaded a copy of the opt out letter for patients to download and sign. If yours hasn't, try searching under "screening opt out letter acorn surgery" and print off one of theirs! I opted out in 2003 and the issue has never been raised since, and no letters! It is disgraceful that women can't access healthcare services for whatever problem, because of haggling over this wretched test. Good Luck.

7

Pleased you haven't been bothered since, Informed. I've heard the UK opt out is only "good" for 4 or 5 years and then the "offers" start again. (you have to keep opting out every 4 or 5 years)

I plan to test that here in Australia if they introduced a UK style call and recall system, I'll be opting out permanently even if that means handing the matter to my solicitor.

8

Susuan

Sorry you were put through a painful and upsetting experience, this is the unethical and unfair thing about this testing, they KNOW that almost all women are HPV- and cannot benefit from pap testing, yet they persist with this testing regardless.

If you're concerned about this rare cancer, you could self-test for HPV  (NO speculum exam) easily and reliably, about 95% of women aged 30 to 60 are HPV- and cannot benefit from pap testing. (but can be harmed)

Post menopausal women can find this test intolerable, and it can be hard to get a decent sample, so they may face re-testing. (false positives are more likely too)

It's cruel when they know almost ALL of these women cannot benefit from pap testing, and there is a much better way...but IMO, they simply don't care.

If you're concerned, use a HPV self-tester to check your HPV status. HPV- and you can forget pap testing, if you're HPV- and confidently monogamous or no longer sexually active, you might choose to forget all future testing, otherwise, you might choose to self test for HPV again in the future. The new Dutch program is 5 tests in total, the last at age 60.

I'd be writing a letter of complaint, more women should complain, why are we puttting women through hell with this testing for NO good reason and exposing them to risk? Is money more important than our health and quality of life? I think YES is the answer to that Q.

9

Susan

Jade Goody had an adenocarcinoma, an even rarer form of cc usually missed by pap testing. (false negatives)

When a young women (under 30) gets cc, it tends to be an adenocarcinoma. The pap test was designed to detect/prevent squamous cell carcinoma.

So once again they choose to mislead women, using Jade Goody to scare women, especially young women, into testing. It's highly unethical conduct and says to me they have no respect for women and informed consent. (and even consent itself is often missing)

Dr Margaret McCartney has written an article on this point. (Jade Goody's cancer and pap testing)

This is why the Dutch and Finns have never offered pap testing to women under 30, it doesn't prevent these very rare cancers and young women produce the most false positives of any age group, so pap testing is fairly high risk for no benefit for women under 30. 

(and of no benefit to the 95% of women aged 30 to 60 who are HPV-)

10

Yes, it is a good idea to make it clear that your wish is to opt out permanently, which you have a right to do under the terms of the Data Protection Act. Many GP's will do everything to convince you to stay in, which is detrimental to your healthcare. If you are avoiding your GP to save going through this "sales pitch" at every appointment, you will put off visiting for other more common serious ailments. I speak from personal experience here.

If you have made it clear that you wish to opt out permanently, you may find that your surgery will try to tempt you back in by sending you a letter and brochure, "reminding you of your opted-out status" every 5 years. Disgraceful that the NHS, which is supposed to be financially bankrupt, can find the money to send harrassment mail to women who are exercising their human rights.

An example of an opt out letter is below:

To: Dr (@ GP Surgery)

Please do not send me any further invitations to participate in the NHS Cervical Screening Programme. I assume full responsibility for this decision and confirm that I have understood the leaflet on cervical screening, which explains the benefits and disadvantages of cervical screening and the role of screening in preventing cervical cancer and deaths from it.

I understand that my name can be restored to the screening list at any time at my request to my GP Surgery.

(Add your name, DOB, address and NHS number, so they can be certain of opting out the right person.

11

Thanks for the information and the example letter it will be really helpful. I am glad that I'm not alone in how I feel! 

12

Hi Lauren! You poor thing! First question is have you EVER been sexually active? If no then your risk is extremely low of getting cervical cancer but if you've ever had sex before than I'm afraid you do need one. You sound as though you've been really unlucky as most practice nurses taking smears are very gentle - especially if you explain you fears beforehand. You can ask the nurse to stop at ANY time - YOU are in control. Could you take a friend with you? I would really encourage you to go if you have been sexually active because if they do find any abnormal cells they can easily get rid of them before they cause cancer. Good luck!

13

Hi Jackie

No one "needs" a screening test, they're optional, to accept or decline as we see fit. I've declined them, an informed decision.

Also, you may be interested to know that almost ALL sexually active women are HPV- and cannot benefit from pap testing. (but can certainly be harmed by false positives/excess biopsies and over-treatment)

Also, no country in the world has shown a benefit pap testing sexually active women under the age of 30, but this age group produce the most false positives. (it's risk for no benefit)

The Dutch and Finns have never tested women under the age of 30. Pap testing should only be offered to the roughly 5% of women aged 30 to 60 who are HPV+ (and women can test themselves for HPV, no need for speculum exams)

So MOST women are having unnecessary pap testing, excess biopsies and being over-treated. 

"Abnormal" cells are only of interest if a woman is HPV+ and produces a highly abnormal pap test. 

Many things can produce an "abnormal" pap test - infections, inflammation (tampons, condoms etc.) trauma (childbirth) hormonal changes (pregnancy, menopause) etc. Cervical cancer is fairly rare (lifetime risk is 0.65%) while treatments for "abnormal" cells are fairly common...why? It should not be happening, we can easily identify the small number of women at risk who might benefit from a 5 yearly pap testing, the offer of a pap test should be confined to these women.

It should be a scandal that healthy not-at-risk women are being traumaized and harmed by this testing.

Treatments for abnormal cells should be confined to the small number of women who are HPV+ and produce a highly abnormal pap test.

14

Indeed, only those who are HPV positive are at a remote risk of developing cervical cancer. Smear testing women who are HPV negative is a complete waste of the taxpayers money, since they are testing for a disease these women are at no risk of getting. The HPV test is the one, which should have replaced smears, and this can be done by a self-sampling kit at home, although not available on the NHS. They can be ordered online for about £50. The Netherlands will offer this method to Dutch women for free from next January. When will British women get this kind of respect?

In the meantime, the Royal College of General Practitioners recently issued the following statement, in response to some individuals suggesting that women might be ambushed into smear tests at other medical appointments:

"GPs will check that patients are up to date with health checks such as smear tests as part of their routine appointment if appropriate. But the choice should always be left to the woman – the average GP consultation is currently only 10 minutes long and it is imperative that this time is dedicated to addressing the particular problem or condition that the patient presents with. No-one should ever leave their GP surgery feeling that they have been pressurised into having a test that they did not want."

Quite right, too.

15

Informef, I read recently that cytopathologists will see a huge downturn in their work when we move to 5 yearly hpv testing from age 25. Our program is likely to remain excessive compared to the nrw Dutch program. I believe the vast profits made by vested interests have protected excess fot decades and with no respect for consent and informed consent, it was easy to keep women in unnecessary and

excessive testing which also, meant the business of excrss colposcopy, biopsies and

over treatment was safe.

Women have been used to creste s vast industry in tht over treatment of CIN. I consider this medical abusr.

I believe the only reason our program is moving from shocking over screening with the pap test to over screening with the hpv test is down to more women dropping out of our program. I think more women will make an informed decision about screening and that terrifies these programs, they want to control the herd...but more women will put individual choice now ahead of any program, more women have worked out these programs are not to be trusted.

16

Sorry about the tupos, I'm on my iphone.

17

What is the situation in Australia at the moment? Have they publicly announced that you will be switching to HPV testing next year, and that it will be every 5 years? Are many women waiting for the new test to come in, and have they announced that abstainers can get a free test-at-home kit?

Here in the UK they have made no announcements about any change coming soon, but I have seen that a simpler urine test for HPV is being devised and shown to be successful. This would be the ideal solution, although whether they would make it freely available is another matter...

18

Hi Informed

Yes, they've made the announcement that we'll move to 5 yearly HPV testing (the invasive test) from age 25 to an absurd 72 or 73. Self-testing is being kept quiet, but I understand it will only be offered after women have rejected the invasive test for 6 years. (that gives GPs time to work on them)

Of course, women can already get HPV self-testing kits online, (if they know about that option) and as a result (I'm sure) of a few informed women posting on Australian sites about the Delphi Screener, that's now available through your GP, but being kept VERY, VERY quiet.

I suppose they felt if women could get their hands on it, this was the only way to keep their claws in them...to get them or keep them in the program.

I know women who've used the test in Singapore, others ordered it from Singapore, but now there is a local distributor, and you can only get the test kit after you give them your doctor's details.

Control of the herd has always been a major focus here and there is zero respect for informed consent. (even consent itself is sometimes violated)

So we're moving from a program that seriously over-screens women, harming and worrying huge numbers, to another excessive program. (great profits for vested interests though, have to keep everyone on board with the program!). Women will be "offered" (hardly) 5 yearly HPV testing from age 25, now you only need to do basic research to find HPV testing before age 30 is a BAD move, it means about 40% of young women will be HPV+ and I assume they'll be sent for immediate colposcopy/biospy. Pap testing before age 30 is not evidence based either, our young women have suffered greatly under our current program that screens from age 18, (some are even younger) and 2 yearly, this level of testing is serious over-screening, no additional benefit for women, but it generates huge over-detection, excess colposcopy, biopsies and over-treatment. The evidence has been known for decades, but steadfastly, ignored here, it suited too many.

it's a great business model, but a lousy deal for women.

I knew we wouldn't get something like the new Dutch program, that would be too easy, we'd save more lives, and save scarce health resources, and we'd take most women out of pap testing and harms way, but that would also, mean millions lost to vested interests. So, out of the question.

A comment was even made in one news article that cytopathologists and others would have less to do under our new program. (they should have even less to do)

Gyns, GPs and day procedure places will still be fine though, I imagine they'll continue to see lots of young women (HPV+) and do unnecessary colposcopy and procedures. I fear we'll do immediate colposcopy and biopsy on all HPV+ women, that will be 40% of those under 30 and 5% of those over 30.

You have a few vocal advocates for informed consent and evidence based medicine in the UK, we have none with cervical screening, a couple with breast screening, so IMO, these programs are basically free to do as they please. (as long as women are unaware and doctors etc. are on board)

Many women are choosing not to have 2 yearly testing, some are  apparently waiting for the new 5 yearly test that is likely to be introduced in a year or so. (More have worked out this program is not in our interests)

We've had a few articles warning women not to "risk their lives" and wait for the new test, of course, they know 2 yearly testing is OVER-screening, this IMO, is more about making as much money as possible before the changes go through and keeping control of the herd.

The dishonesty is quite shocking, it's almost a game, they have no regard for proper ethical standards, no respect for women or informed consent, some doctors even ignore consent and mislead women, "you need a pap test for the Pill"...no, you don't. There are no checks and measures though, everyone knows what's going on, but IMO, getting as many women screened as possible is their only concern. (and maximizing profit)

19

Business is the right word for this screening programme. It has been a huge cash cow for the private medical business in America, and I think it has been brought in over here, as a step towards privatising sections of our NHS. I would not be at all surprised to see screening put out to private ownership, but we have a general election coming up in May, and the NHS is top of the agenda.

I saw an article that a urine test for HPV has been developed and that this is very promising, but we have had no news at all in the UK about what women can expect over the next few years. As usual, paternalism reigns supreme in UK medicine, and women are being kept completely in the dark, so their little heads don't get ideas that screening mightn't be the magic bullet after all. As you say, their first priority is to keep themselves and their jobs secure, as they are all doing jolly well out of it, and keep the petrified sheep queuing up at the door.

20

Hi Informed,

We're now told the new HPV primary testing program will not start before 2017, apparently, cytopathologists need more time to make the necessary changes to implement the new program. So we'll continue to urge women to seriously over-screen until then, which in turn means, the same work load for another year (and profits) for GPs, cytopathologists, gynaecologists, day procedure etc. They'll delay making the changes for as long as possible. The new program includes excess anyway, so they've been looked after...forget about women!

Also, women waiting for the new test might become concerned and go in for that "overdue" pap test. So win:win for the system.

It's frightening that the very people who are supposed to act in our best interests, are ignoring the evidene, dismissing our legal rights and their ethical obligations, continue to maximize risk for women (harming huge numbers) and enjoying the profits. How could you ever trust a word about women's "healthcare"?