Smear tests

[miriam25]

Hi all,
I seem to have developed a phobia of smear tests - today 10mg of Valium wouldn't even help! I've read about HPV blood tests - has anyone had one or does anyone have any idea where you can get them done?
I've also thought of having a course of hypnotherapy - has this worked for anyone one??
Many thanks

This article nicely sums up a study published in the Lancet:
www.heraldscotland.com/sport/spl/aberdeen/cervical-cancer-tests-falsely-classify-risk-group-says-study-doctors-condemn-screening-mistake-1.676543

"BRITAIN'S #100m programme to screen women for cervical cancer was founded on a ''mistake'' that must never be repeated, a team of researchers claims in a report.

Its introduction 30 years ago was unevaluated.

Now one in 10 young women are falsely classified at risk after ''abnormal'' smear tests.
Thousands face the worry of possible cancer and some are treated for a condition which they may never have, according to the team from Avon Health Authority and Southmead hospital, Bristol.

It carried out a detailed study of detection rates in around 226,000 women in the Bristol screening programme. Despite a high uptake of tests, it found that the expected eradication of 30 to 40 city deaths a year had not materialised. The effect of screening on death rates was too small to detect.

Now that screening was widespread, it concludes: ''We must simply face the fact that we can never know for certain how much contribution screening has made.''"

Interesting discussion. More women are discovering the facts - cervical cancer is rare, the pap test is unreliable, and women's health care is a multimillion dollar business. There is another great discussion going on at this site: forwomenseyesonly.com/ The discussion forum is visited by many women who have chosen to opt out of pap tests.

Thank you for mentioning this. Every woman should have a choice whether or not to screen and no-one should have to put up with coercion, bullying or threats from their GP, every time they attend for an appointment for something else. The NHS has created a monster with this draconian screening programme, that consistently fails to inform women of their choices. By paying doctors cash bonuses to reach an 80% screening target this has put a price on women's bodies, which is totally unethical. The 80% screening target is a violation of our human rights, because it shows that women in the UK are clearly not given a real choice whether to screen or not. Forwomenseyesonly.com is a great website full of informed debate about this issue by women all over the world.

The smear test programme costs the UK taxpayer £132 million each year and about half of this goes to GP's as a financial bonus for getting you to submit to a smear test, so it's mainly for their benefit and not your health. I think this is a disgusting waste of money, for what is an extremely rare cancer. This amount of money should be spent on far more common diseases, which many more people die from each year. If the screening lobby really wanted to save lives, this money would be better transferred to other healthcare issues, such as heart disease and other more common cancers.

don't want the test? Don't have it. Please also ensure you refuse treatment if you develop the cancer, which is also your right.

your choice. Mine, living in a developed country, is to take up the option to have the test.

I'm a practice nurse. I don't like the pressure I'm put under to get as many women up on the couch to reach a target to satisfy my GP boss.

I used to have 20 minute appointments with women. I could talk through the limitations of the test (i.e. this is not a test for cancer, this is a test to discover abnormal cells that MAY become cancer), when she would get the results, discuss her health and well being before making sure she was happy with test and was willing to let me go ahead.

Now I've got 5 minutes if I'm lucky. The test doesn't take very long but if you are having problems finding the cervix, or if you have a nervous patient, you can't rush or you may get an inadequate sample.

I don't think that a bonus should be paid to GPs. Before the recall system was set up and before bonus payments, the screening take up were less than 30%. After the bonus system was put in place, the take up rocketed to over 80%. So it's not your health that concerns doctors. It's the money.

Im prob being over simplistic - why can't we self test? Saves nurses time, we can fit around us and not be dictated to be surgery opening times and saves women worry/stress/being un-comfortable. And the test gets done.
Surely its win/win?

PicandMix it annoys me in literature sent to women there is no mention that patients can opt out. If a patients opts out it does NOT affect the GP's 80% target.

PicandMix the other point is it sounds like you are not getting informed consent. This is worrying as you could be good cause of rape at later under the Sexual Offences Act due to penetrating with the speculum and brush. Quite apart from the usual NMC and GMC guidelines on consent etc.

PicandMix- same thing applies to QOF say you take a BP, height, weight, urine etc and do not inform patients at a New Patient Screen that these measurements are for the benefit of QOF rather than patient care then it could be regarded as assault.

I have a friend who when they register with a new GP is going to land that one on new GP Practice when they fail to explain what the New Patient Screen is really about.

What out some patients are wising up to QOF and the GP Contract.

I'm so glad I found this thread.

I'm 33 and have never had a smear test. I find the idea of it invasive and upsetting, and I feel it is something women are pressured in to by scare tactics and staff who are (in my experience) completely lacking in understanding and patient care.

I did agree (about 10 years ago) to one from my regular GP, but waited for him in the examination room for 30 minutes and he failed to return, so I went without one.

3 years ago I had unexplained bleeding and pain and DP in the end made me go to A&E. I was asked to supply a sample of urine for a pregnancy test (not pregnant) and swabs were taken while I was extremely distressed.

In for a penny - I asked for a smear to be done at the same time and that request was refused by a senior dr. I wasn't "on their books" so they couldn't take a smear.

So for a second time, despite me being so unhappy about the procedure but willing to have one, my request was denied.

I found that A&E visit (and every time the suggestion of a smear is bought up) due to a horrendous experience with a practice nurse when I was a child.

The main comfort I take is from the GP mentioned up-thread who has written about the myths around screening.

My GP surgery occasionally sends letters which go in the bin. I don't visit my GP often or when needed re: other health matters for fear of this pressure to have a smear.

I went for one about 15 years ago. im the first to admit Ill never be a size 12 but was mortified when the nurse after 2 attempts told me 'Its always that bit trickier getting a sample from fat people' I was almost crying in embarrassment. Have never been for another once since

I've been hounded too. On a routine family planning visit I had a doc , a nurse , and a hc assistant all trying to bully me into having one done there and then. They maintained all three would have to be present for it. No way.

Honeybee has raised some really interesting points .

Hi everyone, I see a few people from forwomenseyesonly.com have already commented here, good.
One point I wanted to make, and it's a very important point, only about 5% of women can benefit from pap testing, these are the women aged 30 to 60 who are HPV+

MOST women are HPV- and having unnecessary pap tests that do nothing more than risk your health. This should be a scandal, but adding 95% of women to the equation, testing and "treating" them unnecessarily makes a fortune for vested interests. There are other factors that also, keep non-evidence based screening in place.
Anyway, there is absolutely no point most women having pap testing.

Also, there is no need for most women to endure speculum exams, you can self-test for HPV reliably and easily using the Delphi Screener, and it can be ordered online. I think there is also, Tampap available in the UK. I'm not so familiar with that product, it was effectively blocked here in Australia. (locked behind a doctor's script and then disappeared, our GPs also, get target payments for pap testing, not for handing out Tampap)
HPV testing should always be the primary test and stand alone, never combined with pap testing, the Americans have just added HPV testing TO pap testing for all women and all that does is generate even more profit, it creates even more over-investigation for no additional benefit to women.

Also, HPV testing and pap testing should not be carried out before age 30, the former would see about 40% test HPV+, transient and harmless infections that will clear naturally by age 30. It's the 5% who are HPV+ at age 30 who should be offered pap testing.
Pap testing sadly, doesn't work in those under 30, the same very rare cases occur whether you screen or not. Not one country in the world has shown a benefit pap testing those under 30, but young women produce the most false positives which can lead to excess biopsies and over-treatment.

Evidence based cervical screening can be found in Finland and The Netherlands. Finland has had their 7 pap test program, 5 yearly from 30 to 60 since the 1960s. They have the lowest rates of cc in the world and refer FAR fewer women for biopsies etc.

The Netherlands had the same program, but will scrap it and 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. (until they clear the virus) This will save more lives and takes MOST women out of pap testing and harms way. This will mean FAR fewer women having unnecessary biopsies and being over-treated, so fewer women with damage to the cervix and that should mean fewer premature babies, c-sections, cervical cerclage, miscarriages etc.

There was NEVER a need to harm so many to help so few and all with no informed consent and often, no consent at all. This is abuse, not medical care. Now there is absolutely no excuse, women should be offered HPV primary and HPV self-testing and pap testing offered only to those women who are HPV+
Those HPV- and no longer sexually active or confidently monogamous might choose to forget future HPV primary testing. (and review the decision if your risk profile changes, for example, you take a new sexual partner)

Women will have to fight for something better and the quickest way to force change is to reject the current program and it's shameful treatment of women. This program MUST meet it's target to justify it's vast expense, change will occur promptly when they can't find a way to get sufficient women in for pap testing.

Being informed helps a lot, it's protected me, I'm now 56 and have never had a pap test. Now I understand I'm HPV- and not at risk and cannot benefit. My GP has simply marked my file. I've also, declined breast screening, gosh, be careful there too!
Rather than go into it, another long post, head over to the Nordic Cochrane Institute and read their excellent summary of the risks and ACTUAL benefit of breast screening. (an independent, highly regarded, not-for-profit, medical research group)

Personally, I believe screening is a personal decision, but every woman is entitled to an "offer" (not an order) of evidence based testing and self-testing, and to REAL information which enables her to make an informed decision. I saw the UK promotion using the mother and child, it's a disgrace this is the way they "sell" screening to women. It also, says to me they view women disrespectfully. (to put it lightly)

Anyway, good luck everyone, it breaks my heart to hear that some women take Xanax before a pap test, worry endlessly, avoid doctors and "manage" real health issues. Every woman is entitled to respectful and ethical medical care. An always-rare cancer has been used to cause widespread distress and harm to huge numbers of women and all without informed consent and often there is no consent at all, that is not ethical and legal healthcare, not even close, it's abuse.

Any one can Google Tampap and test themselves at home to see whether they are HPV positive or not. As the name suggests, it involves inserting a tampon for 5 minutes and then sending this off to a laboratory. It is not available on the NHS (they want you to keep rolling up for their smear test), so you will have to pay for Tampap. I think it costs about £50.

Cervical cancer can only occur in certain women who are HPV+. So it doesn't matter if your smear is abnormal, as long as you are HPV-, you cannot progress on to cervical cancer. The NHS is now checking abnormal smears to see whether they are HPV+ or not. If not, you go back into the normal recall, regardless of whether the smear result was abnormal or not. If the NHS would let all women find out first whether they are HPV+ or not, they wouldn't need to bother with the smear test in the first place.
However, HPV is a common passing infection, especially in young sexually active women, so it is not advised for women under 30 to test themselves for it, because they are quite likely to come up HPV+ for short periods of time until their bodies clear the virus. In nearly all cases the virus will clear within a year or two. It is only when this doesn't happen, that women should make sure they are getting careful medical surveillance.

There are 2 types of cervical cancer and the smear test is only any good at detecting early signs of what may progress to become the slow growing variety. For the fast growing type, which affects young women like Jade Goody, the smear test often doesn't find this as it is not growing on the surface of the cervix. No amount of smear testing would have saved these women's lives, and it is completely wrong information for the media (and charities) to claim that it would have done so.

Further to my above post readers may be interested in these newspaper reports about the new HPV test:
<a class="break-all" href="http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCsQFjAB&url=www.qmul.ac.uk/media/qmnews/items/101912.html&ei=bQe9U5fxErCy7AaT5oHoCQ&usg=AFQjCNEovr0v1qfZlCqaWumkzwn6XMXUIw&bvm=bv.70138588,d.ZGU:" rel="nofollow" target="_blank">www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCsQFjAB&url=www.qmul.ac.uk/media/qmnews/items/101912.html&ei=bQe9U5fxErCy7AaT5oHoCQ&usg=AFQjCNEovr0v1qfZlCqaWumkzwn6XMXUIw&bvm=bv.70138588,d.ZGU:

HPV is responsible for great majority of cervical cancer but not necessarily all of them.
My surgeon has operated on very young women who haven't yet become sexually active so presumably hpv free.
And yes, smear tests, if properly done, should pick up abnormalities of endocervical cells. To say that adenocarcinomas cannot be found through smear tests is false and irresponsible.

And Jade Goody, afaik, had several abnormal smear test results that she ignored.
To say that no amount of smear tests can prevent deaths from endocervical cancers ( what Adawells presumably means by fast growing cancers high up in the cervix) is just fucking ignorant.

Winny
The pap test was designed to prevent and detect squamous cell carcinoma, which is the more common type of cc (but still a rare cancer, lifetime risk is 0.65%) Sadly, young women tend to get an even rarer type of cc, adenocarcinoma, and this cancer is often/usually missed by pap testing. (false negative cases) Also, young women produce the most false positives, so some believe pap testing for those under 30 is harm for no benefit.

If you look at the Finnish program, around since the 1960s, they offer 5 yearly pap testing from 30 to 60, they have the lowest rates of cc in the world and refer far fewer women for colposcopy/biopsy/treatments.
Here in Australia we "treat" more than 10 times the number of women, largely because we screen very young women and seriously over-screen all women, so more false positives, lots more!

My understanding is that almost all cc is linked to HPV, the cases that "might" not be linked are usually not picked up by pap testing anyway. (small cell carcinoma) Sadly, these cases are usually diagnosed after a woman becomes symptomatic.

I believe all women, including young women, should be given all of the evidence and left to make informed decisions. By misleading women, well, we can't make informed decisions. Some women believe a normal pap test is bullet proof, it's not, false negatives occur. (especially those under 30) Young women should be advised to see a doctor with persistent and unusual symptoms, not for a pap test, but a proper investigation. (even if their pap test was normal. (assuming they have screening))

My concern is the failure to provide women with evidence based screening, better options, and to respect our right to choose, and yes, that may be declining to test or adopting another form of testing. I firmly believe the best program in the world for those women who wish to test is the new program recommended by the Health Council of the Netherlands, they'll scrap population pap testing, a burden for the vast majority of women who cannot benefit, and 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. (until they clear the virus)
This will save more lives (including more cases of adenocarcinoma) and takes most women OUT of pap testing and harms way.
Jade Goody had an adenocarcinoma, using her case to sell pap testing is deceptive, most of these cancers are missed by pap testing. Also, I partly blame the system for Jade Goody's demise, she was traumatized by a very early "treatment" at age 16 and said she couldn't face more treatment.
Pap testing a 16 year old girl is not good medicine. (and not backed by the evidence)
If women are offered evidence based screening, are given all the information they need, I believe more of us would make better decisions when it comes to our healthcare. Screening is always our choice, an option, a private matter, and a question of weighing up the pros and cons. I've always declined pap testing, the risks were too high for me, I was content with my near zero risk of cc, I'm not prepared to accept much risk at all for a rare event, now I know I'm HPV- and cannot benefit. I've also, declined mammograms.

Thanks for the information, Elizabeth. Very interesting and lots to think about. Can I ask why you have also declined mammograms?

Well, in my case, a smear test picked up glandular cells abnormalities and the resultant colposcopy discovered adenocarcinoma. I had a look at my previous tests and on all of them it said that a satisfactory number of glandular cells (ie the ones from endocervix) was sampled, so I find it hard to believe that only ectocervical cells are sampled. It may be easier to miss abnormalities in endocervix, however smear test remains the best chance to pick them up before the patient is symptomatic. I think only in the last 2 or 3 months I've seen quite a few posters on MN who had the AGC results on their tests so it seems like it isn't that unusual for the smears to pick up on abnormalities higher up in the cervix.
I agree that as most cervical cancers seem to be caused by HPV, the screening for that virus would be very beneficial. Not sure about the Dutch program of screening HPV positive women once every 5 years-perhaps statistically speaking it may make sense, but on individual level...Some cancers grow very fast so 5 years seems quite a long time to me. I was only 10 months late for my last smear test. I'm 34. Very glad to hopefully have caught it in time so I can be there for my children. Very extensive surgery and recovery from that and, most of all, the emotional fall out from it all, hasn't been exactly fun, though, so I would really hate for women to read here that smear tests are basically useless and not go get them done.
When there is more efficent screening system in place, great. For now, better to get checked.
And just to reinforce the point, it is not true that adenocarcinomas are invariably fatal and therefore there's no point in trying to detect them in time. I think the newest research finds that there isn't much difference between the outcomes for adenocarcinomas and carcinomas per se, more rather to do with the size of the tumour, the depth of invasion and other markers specific to the individual cancer, IIRC. So always worth checking. And perhaps asking for the HPV test as well and then tailoring the frequency of the smear tests to that?

Really pleased to hear your treatment has gone well, winnybella. Nothing more frightening than thinking you might not be there for your children growing up. for a long and happy future.

i have had many smear tests over the years and the smear test as we know it is barbaric medieval and belongs in the dark ages, the last one I had and I mean " the last one " was torture the sadistic practice nurse opened my cervix till I screamed then continued opening it she left me with instrument still intact I was physically paralysed whilst she fumbled around on her desk, I reported her to the police as I know she intended to cause me actual physical harm. I reported her to the police but they told me " they know this sort of thing happens but as I had given my consent for the smear test there was nothing they could do "
of course I went through the n.h.s complaint channels which was a joke.

GPs get paid a certain amount (not huge by any means) for having either 50% screened or 80% screened. So once we have screened 80/100 the rest of those we screen don't earn any more money. If a patient declines or fails to come after 3 letters they can be excluded from the denominator so there should be no reason for all this hounding.
In Edinburgh our screening is run centrally so we don't actually do the recalls it comes from the health board. If some one doesn't want it then we send a letter and they are excluded. However I think every 3 years a letter goes out again. Sadly this is because some people have tried to sue us for not recalling them even though they have previously declined. The screening programme is not fail safe though and people who have been screened get cancer and people who have not get it. Symptoms are the most important things.

I have been advised by a consultant gynae that if someone opts privately, to have a HPV test, with a positive HPV test smears would be done annually, or every 5 years with a negative test. [This is all privately BTW and only 1 consultant's view]
If someone changes partners then it reverts to the usual 3 years if no further testing is done.

honeybee, what is your stance on mammograms? If/when you get a letter through the door inviting you to have one, will you go for it?
Are you against them as well, or is it mainly smear tests you are against?
Is it most female screening?
Genuine question.