Avoiding Smear Test

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.

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.

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.

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

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...

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)

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.

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"?

Hi Jackie, any woman can choose whether or not to screen. Approximately 29% of young women will produce an abnormal test as they deal with transient HPV infections which clear in about 90% of women. LLETZ treatment of abnormal cells,which rarely go on to become cancerous, can cause late term miscarriage, problems with cervical dilatation in labour and incompetent cervices. None of this is ever explained before you step on the cervical screening pathway.Do your own research.

Hi PharmaSarah.I personally chose not to have my girls vaccinated. My concerns are, it has not been proven to prevent cervical cancer as that was not the research endpoint. Cervical cancer is uncommon and actually always has been, not that we have been told that. We always get the worldwide stats and told that it is the most common cancer in women under 35; not true according to Angela Raffle.Any protection afforded by the vaccine may have worn off by the time a woman reaches her twenties, who knows. Gardasil ony protects against subtypes 6, 11,16 and 18.What about all the other subtypes.Will the natural order be upset?There have been adverse events.When Merk tested Gardasil for adverse advents, they did not test it against an inert placebo but used the aluminum adjuvent in the vaccine. Far too many issues for me to inject this into my girls, you may decide otherwise. It is important that you make an informed decision that you are comfortable with. All the best, it's not easy trying to get unbiased info from the authorities.

I'm not sure about the UK Sarah, but I'd google Delphi Screener and the manufacturer's details should appear. I know Australian women have ordered the device online and posted their sample back to Singapore so you should be able to do the same thing - order it from head office of the same company in The Netherlands. 

I doubt they'll offer HPV self testing any time soon, even in countries that have this option, they only offer it to women who refuse the invasive test or use the test to try and persuade women who don't want to screen, they never seem to take NO for an answer.

Australian women can now request the device (and pay for it) through their GP, but it's being kept very quiet, it's only for informed women.

Tampap is available in the UK, I noticed they're telling UK women that if the test shows they're HPV- they should still have a smear test, not true, if you're HPV- and that's MOST of us, you cannot benefit from smear testing. (but can be harmed by false positives, excess biopsies and over-treatment)

I haven't had the time to do a lot of research into Gardasil, but I can tell you something, I wouldn't believe a word coming from official sources. I've listened to the medical professions and these programs mislead women for decades, so I don't trust them. I'd urge you to do your own research and make an informed decision. I don't have a daughter, but if I did, I'd take my time and do thorough research, cervical cancer is a fairly rare cancer, I wouldn't be prepared to accept much risk at all to cover a rare event. (some girls have had a bad reaction to the vaccine, that has caused chronic fatigue type symptoms that have persisted for several years, many have been unable to go to school - I saw a documentary about some Danish girls in this position a couple of months ago)

I don't have smear tests at all, rejected them decades ago, I've never had one, it was one of the best healthcare decisions I've ever made. it's been horrible seeing so many women being harmed by this testing and the ugly aftermath, almost all of that damage was avoidable with evidence based screening and some respect for consent and informed consent. It really is an outrage the way these program have treated women.

Hope this information is helpful, I'll send you a link to that documentary. 

Thank you so much for your reply, I will do some more research. Definitely against the vaccine as my gut reaction, but we'll have to see. 

Thanks so much for replying. Will watch the documentary.

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.

 

"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. 

Hi Eliz, thanks so much for your thoughtful reply, I do appreciate all the info and you explain it so clearly. I fully understand you're not telling anyone what decisions to take. I'm with you on wanting to get the evidence out there to all women so we can make proper informed decisions and give informed consent to any screening test. Guess what - my smear test 'invitation' arrived yesterday! Will be putting my 'decline, thank you' decision in writing. Thanks for posting the helpful opt out info on here. The leaflet that came with it mentioned that some parts of the UK now will also test for HPV at the same time, as a trial or early roll-out of this. But it didn't tell you if that's happening in your area. Thanks again.

 

You're welcome... 

Sarah, many women find that once they have the evidence and can make an informed decision, they stop worrying about this program.

Gone is the fear that every consult will mean pap test pressure, many feel empowered, finally in control of their own healthcare and body. I think that's why the evidence has always been hidden away, it's harder to fight back when you don't have the evidence, it's easier to frighten women, that made it easier to treat the test as almost mandatory for women.  Screening has never really been presented as a choice for women, just for men.

The screening program has a high target to meet to justify it's existence and the expense...also, many make a fortune from these programs, especially excessive ones.

So keeping women ignorant and compliant meant steady business for these programs and a better shot at the screening target. Some GPs also get target payments for pap testing, a potential conflict of interest. (and an additional payment for capturing an unscreened or "overdue" woman) How can you be overdue for an elective test?

It's hard to understand how this shocking abuse of our legal rights and bodies could have been acceptable to so many and for so long, it says a lot about the way women are viewed by the medical profession. We need to change attitudes and that starts with women demanding to be treated better, like a competent adult, not a target

Best wishes

Elizabeth