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Smear tests

203 replies

miriam25 · 30/12/2013 17:54

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

OP posts:
RedToothBrush · 31/12/2013 20:33

Hombre, that begs an interesting question then...

Why are we not being routinely screened for HPV too? Its less invasive.

honeybee66 · 31/12/2013 20:34

You can of course still naturally clear HPV yourself without any treatment, sometimes you can't of course, but usually you fight the infection as your body would any infection.

honeybee66 · 31/12/2013 20:36

Redtooth there is a whole industry dependant on screening which why there is an a GP target of 80% so answer as usual is money. Money talks. Less than an 80% uptake and screening is not economical.

HombreLobo · 31/12/2013 20:36

HPV test involved testing cells sampled in the same way as a standard smear tests, no more or less invasive.

domoarigato · 31/12/2013 20:45

“The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.”
?Stephen Hawking

honey hand on heart, how would you feel if you got cervical cancer? I've read all the stats and with CIN3 30% chance of cancer is still high.

I wonder if such women who refuse are feeling fear in some way and need to justify a reason for not undergoing tests. I avoided for 5 years out of fear and have recently had lletz for CIN2. The treatment sucked but I wasn't going to wait around for it to progress.

It amazes me that people who have no medical experience and read a couple of medical papers think they know it all. So what if 1 GP doesn't go for smears?!

RedToothBrush · 31/12/2013 20:47

Page 69 of McCartneys book.

Angela Raffle, a public health doctor in Bristol, has produced some of the most illuminated research about how effective the cervical smear is. She and her colleagues published a paper in the BMJ in 2003, which analysed the effect of cervical screening amongst the 350,000 women in the Bristol area she worked in and organised cervical screening for. The results were disturbing because they rub against the straightforward logic about screening prsents to us by its proponets. I quote:

'For every 10,000 women screen from 1976 to 1996, 1,564 had abnormal cytology, 818 were investigated and 543 had abnormal histology. 176 had persistent abnormality for two years or more. In the absence of screening, 80 women would be expected to develop cancer of the cervix by 2011, of whom 25 would die. With screening ten of these death could be avoided... The lifetime risk for having abnormal cytology detected could be as high as 40% for women born since 1960.

Lets recap. Without screening, over 20 years, 25 out of 10,000 women would die. With screening, taking the same group over the same period of time, 15 would die of cervical cancer. Only ten - the difference between 25 and 15 - out of the 10,000 benefitted from screening by having their lives extended.

Ten women out of every 10,000 over 20 years isn't, of course an unimportant number. But it's not the only number here. To stop these deaths from cervical cancer, you have to do a lot more tests on a lot more women. A total of 818 women had invasive tests, namely a biopsy. A biopsy can be taken using a adapted microscope which examines the cervix, and can treat using an adapted microscope, which examines the cervix, and can treat areas of abnormal cells, in a process called colposcopy. Of these biopsies, 543 had an abnormal result. Two had cancer, 22 had 'micro-invasive' cancer, 361 had high-grade dysplasia, and 158 had low grade abnormalities.

Isn't all this worth it? After all as we are told by the NHS, it could save your life. Perhaps, perhaps not. 'Anxiety' is often mentioned as a 'minor' side-effect of screening. It's said so slightly as though it hardly matters. But anxiety as a side effect does matter. Some women are made ill from worry when a letter arrives on their doorstep telling them that their smear is abnormal and they need further tests. Women can become sleepless, imagining infertility, early death and their children growing up without a mother. Some women manage to put this to one side and get on with their other concerns; some don't. It can be a pervasive worry and a recurrent fear. Anxiety isn't just a minor side effect.

Colposcopy may just involve inspection of the female genitals. It may also involve treatment to the cervix. In the UK, a common treatment is 'large loop exicision of the transformation zone' where the abnormal cells are removed under local anaesthetic. It's popular because its quick, can be done immediately and doesn't need an overnight stay in hospital. But is associated with problems later - namely preterm birth. Women who have had this procedure are more likely to have baby born before full term. One Canadian study found that 2.5% of women who hadn't had a LLETZ procedure gave birth prematurely, as opposed to 7.9% who had.

Is it worth the risk? It might be. It depends on your perspective. A woman may feel that a small chance of stopping a death from a cervical cancer is worth the downsides, such as LLETZ procedures that do not benefit the patient and raise the risk of premature birth. Or she may not. What if she had several anxiety-inducing smears, biopsies and treatment with no benefit to her?

I can't answer that question. But I do feel deep discomfort that these issues are not raised with women routinely before having a smear test. The government may have decided that the smear test is a good thing; but that may not correspond to the woman's own wishes.

With cervical screening, Angela Raffle's study says the potential good is a reduction in cervical screening from 25 to 15, per 10,000 women, per 20 years. The cost of achieving this means that almost 1000 other women get letters telling them they have abnormalities and need repeat tests. More than 500 require colposcopy and biopsy, with the risk that this may lead to premature labour in pregnancies.

Despite the easy lure of government posters, cervical screening is not a simple exercise akin to a visit to the cinema. It isn't a clear cut situation of good versus bad, but a balancing of potential gains and harms. Doctors should not assume that you want to make this trade. Doctors should help you decide what you want to do; explain the risks, not just decide that you value the chance of gain enough to accept the potential harm.

Personally, I think that the overselling and oversimplification of this difficult melange of pros and cons we currently have is a patronising outrage. It's oversexed health advice; overselling of a complex test with many outcomes, not all good. The losers are us, the 'customers' who are simply enticed into screening.

RedToothBrush · 31/12/2013 20:48

Why did I post the above?

To show the point that McCartney questions and asks YOU to make a decision. It is perhaps biased more against rather than for, but I think her points are valid still in the context that she is challenging the fact that we should blindly accept what we are told. She is not telling us, not to have a smear, merely to consider the information and the fact we should all be getting ALL the information. I fail to see the problem with this.

I think her point about anxiety is important too. It is regarded as a very minor thing and not taken as seriously as it should be. I think taking it more seriously across the board would benefit all women taking a smear as it might change the attitudes of those performing it. I think the NHS as a whole could be doing a lot more about this, but choose not to as its costly.

LEMoncehadacatcalledSANTA · 31/12/2013 20:49

I have no wish to read this book - I make my own choices based on my own educational background and personal experience.

RedToothBrush · 31/12/2013 20:52

Then don't, but don't say she's a quack if you can't be arsed to try and and examine what she's saying.

honeybee66 · 31/12/2013 20:52

LOL Domaor by profession I was a qualified Therapeutic Radiographer ie treating cancer patient so yes I can read medical research thanks. Also worked in medical research and on clinical trials. I have treated cervical cancer patients and my grandmother had cervical cancer.

My decision would still stand I do not want screening and I resent very much the NHS not response.

CIN 2 may of course have cleared itself. Cervical cancer is rare even without a screening programme incidence is 1-2%. I am very happy to live with a 30% risk re CIN 3. I far more concerned about unnecessary treatment screening

Interesting I spent the afternoon with a GP friend last Sat and he was moaning about how the hype from DH/Government re screening, if you have a cough for 3 weeks see your GP etc, etc has scared patients so much they can no long think for themselves and hence why there never any appointments as the DH/government has just increased demand on GP's. I think he had a valid point.

domoarigato · 31/12/2013 20:53

undue I think a lot of people do this already: What we should be doing is emphasising the limitations of screening as part of the process of informing, and making sure that people are aware of any symptoms that should be taken seriously even if they have tested negatively. I mean, Gardasil is only 70% effective, so I'll make sure my daughter still has smears. You wouldnt ignore bleeding just because you had a normal smear. That's patronising to imply that women are ignorant.

LEMoncehadacatcalledSANTA · 31/12/2013 20:55

I suffer from anxiety and not so much now, health anxiety strangely enough I had limited anxiety about things when i had this, because i knew it was caught in time due to REGULAR SCREENING. If i didn't have my smear, i would be dead, there is no question about this - so if i had read that book and thought ok, i wont bother then, i'd be dead. Is that difficult to understand? or as only one person? am i not important in the grand scheme of statistics? Thats the thing with statistics really isn't it - you can apply whatever statistical test suits to demonstrate that your results are "statistically significant". I did this for my PhD, i presented the one in my thesis that made my results appear the most significant.

SinisterSal · 31/12/2013 20:57

Well I hope the OP manages to get over her fear and goes for the screening. 5 minutes won't kill her and she can toodle pip on with her life with a slightly more relaxed mind

Good luck OP

RedToothBrush · 31/12/2013 20:59

domoarigato, the problem is I do not think that women are being informed properly though. I certainly have never been by the NHS. The information I have had is very one sided. I was never given the room to say 'no' by my other GP. It was not regarded as a valid choice and it should be, even if a doctor doesn't like it.

Like I say, consent is only consent if it is given without undue pressure.

I do not think screening should stop. I think that the way it is promoted and the way in which it is being advertised and GP's are forcably being made to approach it, with targets needs to change as its causing its own problems.

domoarigato · 31/12/2013 21:01

www.ncbi.nlm.nih.gov/m/pubmed/19487067/

have you not considered that McCartney is wanting to make money and in order to do this she's peddling a controversial book?? Oh and undue has just proven my previous point about people reading a few books and making certain decisions - a paper has been written on psychological effects..see link.... so some people aren't all knowing as they think on this subject and make decisions that affect their health! Scary!

honeybee66 · 31/12/2013 21:07

LOL docmoar Margaret's current campaign is to get a doctors to decalre their financial interests.Margaret always declares her financial interests its on her blog!

Not sure what link was suppose to tell me I am lol Nothing I did not know.

You are wrong assuming people commenting here have no medical background and those that do nt have no alternative but to find the facts for themselves as the NHS does not want to tell us.

rabbitstew · 31/12/2013 21:16

You aren't going to have a national screening programme if not enough people join in, so there's no point pretending the action of opting out has no consequences for anyone but yourself, any more than people opting out of the MMR had no consequences for anyone but the people who opted out of it. Being honest about it, if you are angry enough about the screening programme to opt out of the whole NHS as a result of it, it is because you actually disagree with the screening programme in general and feel it does more harm than good - ie, you are happy to discount the lives of the 10 women per 10,000 that have been shown, statistically, to have had their lives saved by cervical screening, because you feel the harm done to others in finding those 10 women was greater than the value of those 10 women's lives.

honeybee66 · 31/12/2013 21:29

The programme needs to be opt in sorry but you cannot coerce patients into attending that is not valid consent and is downright assault. For me it does more harm than good I do agree with the statistics that support.

My all means have a Screening Programme but make it opt in and respect the wishes of women who want to opt out. Also give women unbiased information re risks and benefits.

Screening cannot be compared to MMR cervical cancer is not infectious in the same way a bad comparison.

The only way I can have my wishes respects is to deregister from the NHS as otherwise its just constant hounding if not letters from GP/Nurse themselves. I formally complained and got told oh we will not contact you and marked my records but what happens 18 months of the GP/Nurse go again hounding me. At that point I threatened the GP with the GMC and told him to deregister me.

As SugarCane the Practice Nurse says women's wishes/informed choices are just not being respected by the NHS.

Meglet · 31/12/2013 21:30

miriam I found hypnotherapy useful, although for a very different reason. I used to get panic attacks during martial arts grading (including fainting) and a couple of sessions of hypnotherapy allowed to me to fly through the grades.

My life was possibly saved by having smear tests. I was very very low risk for any problems but a regular, 3yr smear, showed I had developed cell changes. I had no symptoms of anything, my periods were like clockwork with no random bleeding. A follow up smear, and then colposopy showed I had CIN3 / carcinoma in situ. I had 2 LLETZ treatments (first one didn't quite get it all out) then 4yrs later following further changes after I had DC's I had a hysterectomy. Yes, it scared the life out of me going through all that and I did have to have diazepam some of the time but it was worth it to not develop cervical cancer.

rabbitstew · 31/12/2013 21:35

Nobody coerced you into attending, honeybee. You got letters that the NHS was too incompetent to stop in your case - they never refused to stop sending you letters, or told you they would fine you, imprison you or otherwise punish you for not attending for screening. Don't conflate incompetence with coercion. Nobody pinned you down to an examination couch and forced your legs open.

PennySillin · 31/12/2013 21:40

It's a shame you are being hounded this way and while I fully support the screening programme I believe your wishes to not partake in it should be fully respected.

Your GP practice is not the same the UK over, our practice do not hound women. The NHS contact our ladies twice and we follow it up once and then you are removed from the list for 3 years, within the time the 3 letters are sent out you are invited to contact the surgery to refuse if you would prefer if not we take your silence as a refusal. No phone calls, no hounding.

honeybee66 · 31/12/2013 21:41

Yes it was about coercion just constant hounding. GP still continued to constantly hound physically on the phone and in consultations even after a formal complaint! I had no other choice but deregister.

End result I would never trust a GP or the NHS again.

You reach a point you can only say NO so many times before you need to final bring the situation to an end in my case my deregistering.

LEMoncehadacatcalledSANTA · 31/12/2013 21:45

I am quite suprised to read about the "hounding" as in this area, if you ignore a number of reminders you are removed from he screening program.

SinisterSal · 31/12/2013 21:48

constant hounding? I'm surprised they have time for that.

honeybee66 · 31/12/2013 21:56

No Lemon that is wrong GP still have a requirement under their contract to to include patients even if they have opted out of receiving the screening letters, as per RCGP guidelines. The GP Read Codes to opt patients out on their GP computer are only valid for 5 years hence why due to the GP contract some GP's hound even if you have opted out of receiving Screening Letters from NHS Englands local Screening Office. They are still required by the NHS (NOT legally required) to get patients to review their decision under their contract.

Plus under the contract GP's get paid if they reach an 80% target of women being screened.

Also if you do not respond to 3 requests to attend sent from NHS England Screening Office when the next round of Screening comes round you are written to again.

Its just never ending then you have Breast Screening too so sick of it easier to deregister.

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