Avoiding Smear Test

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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! 

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  • Posted

    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.

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    • Posted

      Thank you for this post. I was "Googling" support on not accepting these screening "threats". The ACA here in "the states" is free and so they are really pushing, is money a motive? My body and immunity is my business. I always have to come up with things to say, like "I'll see..." There is a tendency to think they won't treat me for what I need if I don't do this stuff. I need antidepressants, e.g. But your comments will help bolster me in standing up for myself. You'd think they'd want more of us to be responsible for our health. I realise they fear litigation, but that is so not our problem ! Peace to you all here...
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    • Posted

      PS I like the idea of a opt out letter, that way they can have something in writing to free them of this fear they may have of being sued or something. Planned Parenthood actually sent me a registered letter once to come in for a procedure based on 2 "abnormal" paps. I went to another doctor and never had an abnormal pap since. Wierd, huh? That was in the birth control pill days, they held that pap test over you to get the pill. I submit if men had to go through something as uncomfortable and intrusive they'd quickly come up with a blood test.
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    • Posted

      Lorraine, they DID, lots of men refused to have the digital rectal exam, it was readily understood that men found the exam unacceptable and they came up with a non-invasive alternative, PSA testing.

      Of course, neither is recommended any more here in Australia, both the exam and test are unreliable.

      Whenever the invasiveness of the smear/pap test comes up though, it's fobbed off with, "oh, women have to get used to these exams" or "women have babies so they're used to invasive exams" etc.

      We're TOLD the test MUST be acceptable to us, or there's something wrong with us!

      The attitude is disgraceful, it's clear the test IS unacceptable to lots of women, otherwise they wouldn't have to push, coerce, scare or mislead women into testing.

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    • Posted

      frustrating! Well I did mention to my young, who could be my grandson, doc about the "if men had to..." and he laughted rather sheepishly. I will continue to reserve my right to choose on these screenings...
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    • Posted

      Good for you, Lorraine.

      I've never had a smear test, an informed decision made many, many years ago. (I'm 58) Now in those days, pre-internet, it meant spending time in the Medical Library and speaking to a couple of medical academics. This information has never been released to women, the silence over the decades has been deafening, there is rarely even an acknowledgement that screening is elective for women as well, not just for men.

      My aunts and great aunts were feisty women ahead of their time, this was in the early days of testing. A young doctor urged one of my great aunts to have a smear test, she asked what it was and then silence fell between the doctor and my great aunt...she then slowly and calmly (and firmly) said, "Is there something WRONG with you, young man? It was never mentioned again, sadly, many women don't feel they can Q or refuse this testing.

      It's the unfairness and violation of our legal rights that continues to concern me, it worried me decades ago and still worries me today.

      Women are still viewed differently by the medical profession (and by others)

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  • Posted

    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
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  • Posted

    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

     

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    • Posted

      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.

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    • Posted

      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-)

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  • Posted

    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.
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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      Hi, I am in New Zealand and we have an opt off programme. Following an ammendment to the 1956 health act in 2004 ,the NCSP can access the medical records of any woman on the cervical screening register without her consent. If a woman withdraws from the register they can only get at your notes if you develop cervical cancer.Both myself and my daughter have withdrawn from the programme.I have also had my name removed from the NHS screening programme, citing lack of informed consent and I demanded my complete screening history and got it wiped from their system.
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