Avoiding Smear Test

Tests and investigations
41

I'm mid 50's and when the NHS cervical screening programme was rolled out in 1989, I knew this cancer was rare, was caused by a sexually transmitted infection, and forced compliance was against any woman's human rights so I declined to test, and this set up a very bad relationship with my GP, culminating in her forcing 2 smears on me against my will during pregnancy related appointments. In the 1990's GPs were incentivised financially to reach an 80% screening target, which many doctors assumed negated the human rights of 80% of female patients. Our bodies were up for grabs, and doctors just a few percentage points short of the 80% target would employ all sorts of unethical tactics to force women to undergo a test, leacing many women fearful they would get no healthcare at all if they didn't comply.

This screening programme became an open door to assaults and rapes throughout the UK, as virgins and unwilling participants are routinely bullied into testing, without understanding the test at all.

This screening programme should be in the dock at the European Court of Human Rights for the abuses it has forced upon British women over the decades. 

The shameful history of this abusive programme is now comi g to light thanks to the internet. Many women have been posting for years about assaults carried out on them, but all have ended up "deleted by the moderator" for fear of others finding out what goes on and not attending their appointments. The NHS and the charities which spread fear and confusion about this test cannot play King Canute for much longer. The truth will out.

42

Yes I've read about the safety issues of the HPV vaccine. I'm waiting for the outcome before I decide whether to vaccinate my kid. (Though I'd be v surprised if they publicly admit there's a problem.) 

43

I agree. We didn't vaccinate our girls. The screening authorities are going to be pushing it hard because the uptake in the NZ European population is low. Maybe because we have done our research.

44

Couldn't agree more, it's the same here in Australia, women are TOLD they must or should screen, the Govt website pays lip service to informed consent, and then lists ways for GPs to get around screening "barriers"...how to increase screening rates - nowhere is it mentioned that screening is a choice and that women can reasonably decline to test. (and don't need to provide a reason)

It's clear from the language they have zero respect for our right to choose. You even see the absurd statement, we want women to make an informed decision TO screen, wrong, informed means making an educated decision to screen or NOT to screen.

We haven't seen the same levels of abuse in the consult room, mainly because we don't yet have a UK style call and recall system, but I fear that's not far away. Many women still receive pressure in the consult room though, and some of our doctors are still "requiring" a pap test before they'll prescribe the Pill. IMO, the latter tactic negates all consent and is a very serious matter. It would be like telling a man he can't have Viagra until he has a colonoscopy and we know that would never happen, and we so often hear that informed consent is important in prostate screening, so why isn't it equally important in women's cancer screening? It says to me the profession and others still view women very differently...like second class citizens.

I have to add as an informed woman, I don't fear the consult room, doctors back off quickly when they realize you're informed. These dirty and unethical (and possibly) illegal tactics only work when women are ignorant of the evidence and their legal rights.

It amazes me though...when our program is so bad, how long they were able to keep the evidence hidden, censorship was very effective and the campaign of misinformation, but...all of that is changing fast, it might be easy to silence one woman, not so easy when there are lots of informed women.

45

I am just so angry at having been duped. I trusted in the system. Never again will I believe anything coming from the health authorities. I only researched this when I was opportunistically tested 3 years ago! At least I can now protect my girls.Breast cancer screening is also very dodgy,so I won't be risking that either.Sensible lady doing research at the beginning, I wish I had!

46

finn, don't even think about breast screening until you've read the summary put together by the Nordic Cochrane Institute. (it's on their website)

It's the same approach: give women a screening "story" and use all sorts of insulting, disrespectful and unethical tactics to get us in for screening. Of course, it's harder to force women into a breast screening centre. They'll never reach the target here, numbers are continuing to fall as more women get to the evidence. I've declined to screen...over-diagnosis is a serious risk. IMO, Breast Screen cherry pick research and dismiss anything critical of screening, their job is to protect the program, not women. It's inappropriate (close to culpable at this stage) to push screening using celebrity endorsement, screening could end up taking your life, over-treatment (surgery, chemo and radiation) carry a LOT of risk, including REAL cancer and heart attacks. About 50% of screen detected breast cancers are over-diagnosed, that's horrifying.

I've listened to them lie to women for decades, watched the manipulation, read the misinformation etc., I lost trust a LONG time ago.

47

I researched breast screening after having 2 false positives.I went because Mum died of breast cancer at 36 and again, I trusted.Now Ii know the truth, I'll take my chances and avoid such a harmful procedure. I am forever grateful to Peter Gotzche,H Gilbert Welch and Prof Baum.The screening authorities are full of BS in my opinion!

48

I got to the evidence about 7 years ago, just before my first "invitation" arrived, I wouldn't have trusted them anyway, always intended to do my own research. I knew they'd lied to women about cervical screening and knowingly harmed huge numbers, and violated their legal rights, so assumed the same would apply with breast screening...I was right, 100%.

I was lucky enough to hear Peter Gotzsche speak at the Evidence Live Conference in Oxford in 2013, I travelled all the way from Australia to hear him speak. He came to Australia this year but his visit was kept very quiet, obviously the screening program was not happy to have him in the country with his "controversial" views. He did give a lecture on screening but it seems it was only promoted to a small group of people, I heard about it after the event. I did hear him speak about over-diagnosis and over-medication in psychiatry and the risks posed by the influence of big pharma. I saw an article in one of our newspapers, "Danish Professor visits with controversial views on breast screening"...hardly, he's head of NCI and their report was released over a decade ago!

Censorship and mind control is alive and well right here in Australia.

It goes to show the power of these programs and their backers, supporters and beneficiaries....don't rock the boat when people are making millions from screening and harming women! (billions in the States)

49

I too have very valid reasons for not wanting the test - I was sexually abused - added onto that I had extreme heavy bleeding which resulted in many intimate examinations and hospitalisation for a full emergency blood transfusion with some very harsh and uncaring medical staff who seemed to view me as a slab of meat with no compassion at all (one nurse even shouted at me and told me I was stupid because I began shaking and said I was scared).

I've now had a reminder today and feel sick with fear 

50

Hi Cammie

Please don't let these reminders upset you, you can simply complete a form and opt out of the program. No more reminders. Some women do get another invitation about 4 years later, if that happens, make a complaint and they should stop.

ALL cancer screening is elective, it's your choice, this program and some doctors behave like it's a law, they need to be challenged and reported.

The Medical Council (UK) makes clear informed consent is a must for all cancer screening, also, Anne Mackie (head of the screening program) makes clear these programs must respect choice and informed consent. So a quick note to her (or the Medical Council) should sort out your GP. (or write to the Medical Council)

BUT as a first measure, if you choose not to test (your absolute right) complete an opt-out form and send it off (and send a copy to your GP)

You don't have to give a reason for declining to test, it's your choice.

If you get any push-back from your GP, remind them informed consent is required for all cancer screening and you're aware you can opt out for any reason. Some GPs rely on our ignorance to bully and hassle us about testing, it's a try-on, if you make clear you know your rights, they'll back off.

I don't test, I didn't like the numbers to start with, back in 1980, I was content with my near zero risk of cc rather than the hidden and horrifying 77% lifetime risk of colpsocopy/biopsy under the Aussie program. (and many women end up over-treated)

False positives are fairly common here in Australia with serious over-screening and early screening in place. (neither is backed by the evidence) The UK rates would be lower but still high considering the cancer itself is fairly rare.

ALSO: there is a far better way

The fact is: MOST women are HPV- and having unnecessary smear tests anyway. It should be a scandal to put women through invasive testing when an alternative is available for those who choose to test.

The Dutch offer 5 HPV 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 smear test. So chances are you're HPV- anyway...

(you can buy HPV tests online too)

Life is far too short to be stressed over smear tests, they help very few women and worry and harm huge numbers AND we can now easily and reliably identify the small number actually at risk (HPV+)

I'll send you a private message (if I can) you might care to visit another website that can provide links to the opt out forms etc.

Honestly, the madness of this program, the resources that go into it when VERY few women can benefit, in the meanwhile, women die in MUCH larger numbers from heart disease, lung cancer, obesity related issues (diabetes) etc.

It makes no sense from a healthcare point of view to focus on the cervix. Women are more than a cervix and breasts.

Kind Regards

Elizabeth

51

Thankyou so much x

 

52

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...

53

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.

54

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.

55

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...

56

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)

57

Hi again Eliz

still really interested in this discussion on screening and I just want to check my understanding with you; can you please tell me if I have any of this wrong.  

If I buy a home test for HPV and its negative, I need have no more smears (I am 34) - this is what I plan to do, because they only detect cervical cancers caused by this virus, correct? 

I understand if I get symptoms of cancer I should not ignore them and see my GP. Apart from bleeding after sex, what else is there to be aware of?

are all cervical cancers caused by HPV?

i read about a woman with cc who was HPV negative. Is that a risk?

many thanks for any information.

 

58

"If I buy a home test for HPV and its negative, I need have no more smears (I am 34)"

Hi Sarah

The best evidence based program IMO, is found in The Netherlands, they'll offer 5 HPV tests in total, the first at age 30 and then 35,40,50 and 60, this is to protect women from a NEW HPV infection. (with a new partner or unfaithful partner)

BUT note: HPV- women who are no longer sexually active or those confidently monogamous might choose to stop HPV testing altogether.

So that's your call, if you're HPV- you might choose to test again when you're 40 or not (depending on your circumstances)

Pretty much all cc is linked to high risk strains of HPV so that's why HPV- women won't be offered pap testing in the Netherlands and elsewhere. Here in Australia we'll move to HPV testing next year and the HPV+ women will be offered either a smear or a colposcopy. (I hope it's only a smear but we overdo everything here, we've been horribly over-screening and over-treating for many years)

There are a couple of very rare types of cc that "might" not be linked to HPV (some think they are, others are not sure) BUT these very rare cancers are usually missed by smear tests anyway. (false negative cases) Small cell neuroendocrine cervical cancer is one of these very rare cancers.

The smear test was designed to prevent/detect squamous cell carcinoma of the cervix, (this occurs more often but it's still fairly rare) it often/usually misses adenocarcinoma of the cervix. (and even rarer types of cc) Hopefully, HPV testing will mean fewer cases/deaths from adenocarcinoma. (when a woman under 30 gets cc, it's usually an adenocarcinoma and the woman has often had a recent normal smear test)

Excluding young women from smear and HPV testing and giving them real information is IMO, the best approach. 

That advice (and it holds for older women too) - see a doctor with any "persistent or unusual" symptoms like pelvic pain or bleeding after sex or unusual bleeding, that is, between periods or very heavy bleeding)

(even if they had a recent normal smear test)

Note also that symptomatic women should not be offered a smear test, which is a screening test for women with no symptoms, but be referred for a full investigation.

Hope I covered everything, if not, let me know.

I'll send you a PM with a link to a great forum, full of informed women where you'll find lots of real information.

I don't tell women what to do, the screening authorities do that, but I strongly believe every woman has the right to real and complete information and has the right to make an informed decision TO screen or NOT to screen. 

59

I have an appointment Monday with my NP, and I am supposed to get a pap test, and I am thinking this time I am saying no.  I just turned 58 (yesterday), and I am asexual, never had a sexual experience with another person, by my choice.  I figured out long ago who and what I am and chose to not be sexual with other people.  I have been through menopause for some time now, and the last pap I had was very uncomfortable, and came back fine.  This was roughly 2 years ago.  I have no symptoms or worries, and really just want to avoid all the probing and discomfort.

60

Julie, pap testing was a completely useless exercise for you, it simply exposed you to risk. (false positives, excess biopsies and over-treatment) 

It's unfair, women should be given the information they need to make an informed decision about testing.

I'd stand firm, at your age (I'm the same age) the test is more likely to be painful with post-menopausal changes and you're more likely to get a false positive or need re-testing (due to an inadequate sample)

All the best, don't take any nonsense from your NP