The fear-mongering of the smear

Mention ‘smear tests’ (or ‘pap tests’ to our American friends) and everybody has an opinion. Many will have had an experience with abnormal cells themselves, and consequent procedures. Many will have heard about friends who have undergone such anxiety-ridden times. And most will say women should/must/have to have smear tests.

And I am here to argue against that.

Smear tests should be available, but optional. They should not be forced onto women. And women should be given the correct information to make an informed choice and give consent.

I have been increasingly frustrated recently with the plethora of posts on my Facebook timeline, calling women to “just” get a smear, that it is “just 5 mins of discomfort to potentially save your life”, and that it is “silly” to not have  smear.

Whilst most people mean well, there is a lot of harm caused by this constant bombardment of women to undergo a potentially traumatic, painful procedure in order to be a ‘responsible woman’.

Women are avoiding seeking medical advice for other issues, because they are scared of being coerced into having a smear. This is widespread. Who knows how many women develop and die from other cancers due to delayed medical advice? If you think I am being dramatic, take a simple google search into female message boards to see how terrified some women are.

Given that 1 in 4 women are survivors of sexual abuse, assault or rape, all medical investigations should be trauma-led. There are women who report being or feeling assaulted during the examination. This then puts them off seeking medical help for other issues. There must be more efficient, less invasive ways to test such as urine testing.

I know many reading will think “what’s the big deal”, but to many women it IS a big deal. . Women with a range of life experiences and health conditions, for whom having a smear is not physically or mentally possible.

There is also the heteronormative assumption that all woman are in a  relationship with a man, are all sexually active, and all are having sexual intercourse. Women should not have to justify their reasons for not needing/ wanting a smear test.

Women do not simply ‘choose’ to have a smear. They are pressured/cajoled/bullied/coerced. This is wrong! A simple ‘no’ should suffice. Going to the Dr about your wrist and being lectured about smear tests is not appropriate. (You can download a form online to opt out from your local database, although most GPS and nurses won’t tell you that).

The wonderful Dr Margaret McCartney, a brave and inspiring GP in Scotland, goes against the grain, by suggesting women should make the choice that is right for them. Her blog post Women, cervical smears and manipulation prompted my post, and the comments section is harrowing, although not unusual from what I have heard from women.

Dr McCartney also wrote Why I’m Saying No to a Smear for the Independent. She eloquently writes much of what I am been musing for the past few years.

My own turning point for the bombardment of “why haven’t you had a smear” was when a wonderful locum doctor asked, and I said told her I was sick of people asking, and she said straight away “It is your body. I will write a note on the system so they stop asking”. Such a kind and empathic act. This followed an incident when a nurse locked the door, got a kit out, and said “I will just do it now” despite me not consenting. She only stopped when I burst into tears. (This was a few years ago before I become assertive. Now I would take legal action against such an individual and report them to the Medical Council.). This has got to stop. I have had my smears during my laparoscopies, but I will not be having more. I am low risk, and it is my choice.

I then turned to various groups I am part of, and the internet, and realised how common it is to feel unable to say no to a smear. For surgeries to lie and say there is no way of getting the letters to stop. For appointments to be made without a woman ordering one.

This is not about protecting women. As with my issues with hormonal contraception which I wrote about here, women are ignored when it comes to making informed decisions about our own bodies. We are spoken down to like children. We are told what we must do. But we are not given the real statistics or full information. And we take medical knowledge for granted. There is a massive disparity between the risk of getting cervical cancer, and the obsession with which the medical community harasses us to get tested.

My husband is of the age where prostate cancer is a real risk. He has not once been pressured into any testing. According to the NHS website there are over 40,000 new cases of prostrate cancer each year. Are men bullied into having a lubricated fingers up their rectum on every Dr visit post 50? Of course they are not. There is also “no single, definitive test for prostrate cancer, so your GP will discuss the pros and cons of the various tests with you to try and avoid unnecessary anxiety”. No such luck for women, who are grossly mislead about the dangers of abnormal cells and the need for screening. The fear of over-diagnosis and over-treatment for ‘abnormal’ cells that might never turn cancerous. The study might not seem dated, but at the time Michael Baum, Emeritus Professor of Surgery at University College London and a cancer screening expert, calls the research “absolute dynamite. Any intelligent woman reading that would make an informed decision not to go for cervical screening”.

Dr Angela Raffle wrote the British Medical Journal here, about outcomes of screening.

The conclusion of the study:

These findings have important implications. First is the scale of the problem of overdetection. Even women who receive results of borderline changes can become anxious about their risk of cancer.20 Figure 1 shows that for younger cohorts the cumulative lifetime incidence for any abnormality could reach 30-40%. It is essential therefore that we change people’s perception of the meaning of an abnormal screening result.

Secondly, because of the resources involved and the potential to do harm, it is in the public’s interest to control the introduction of inadequately evaluated or of inadequately quality assured cancer screening. Our results show that cervical screening in England and Wales before 1996 entailed 57 000 tests and 1955 abnormal results for each death prevented. Prostate specific antigen testing for early detection of prostate cancer will involve similarly large numbers of tests and abnormal results and the net result will be major iatrogenic harm from invasive investigations and treatments. We have a duty to protect the public from this damaging activity until there is good evidence on all outcomes.

Finally, our results suggest that over 80% of high grade dyskaryosis and of high grade dysplasia in the cervix does not progress to invasive cancer. This calls into question the prophylactic removal of other organs (colon, ovaries, breast, oesophagus) and the offer of potentially harmful chemotherapy and radiotherapy treatments for healthy people found to have dysplasia of those organs. The net result could be harm because the absolute risk of progression in these tissues may be low“.

This is in opposition to the common-sense discourse of believing women MUST get cervical screened, and that all detections of ‘abnormal cells’ will “save lives”.

As the blog Women Against Stirrups argues: “Dr Angela Raffle, consultant in public health medicine in Bristol and author of the BMJ paper, began the research because she was struck by how many women were being referred for colposcopy (microscopic examination of the cervix) after abnormal smear test results.

‘Originally, people thought everybody with an abnormality would go on to get cancer, and we have come round to realising it is just a phenomenon of screening,” she says. “Cell changes are very common and all of us have them, and they go away; it is impossible to predict who is going to go on and get cervical cancer….

There could be a reason for this. Raffle says that the screeners realised in the 1980s that they needed to screen and treat enormous numbers of women in order to make an impact on mortality figures. Most would not have gone on to get cancer – but a very small number would, and it was these women they wanted to catch. If women realised how unlikely it was that they would personally benefit from screening, the screeners might not have got the numbers they needed to reduce cervical cancer deaths”.

So why then are we not allowed to have an honest and transparent discussion about cervical screening? Why are those opposed to the dominant discourses surrounding smear tests  shouted down as “irresponsible”. Surely a lot more research needs to be done, and we need to question this? Sadly, as with most cancer debates, the topic is so emotive, we cannot have a reasoned discussion.

There is recent research to suggest that if you do wish to take up cervical screening, every 10 years is safe, rather than the 3 years the UK currently operates.

Over 3000 women are diagnosed with cervical cancer each year. This is obviously terrible. However over 19,000 women are diagnosed with lung cancer every year, and over 55,000 are diagnosed with breast cancer per year in the UK. Every year over 11,700 women die from breast cancer in the UK. This is not to minimise cervical cancer, but to say in the grand scheme of things, it really isn’t my biggest worry, breast, lung and bowel cancers are.

Meanwhile we are being lied to about putting harmful silicone into our body, women under 25 are being routinely refused smear tests when they actively seek them, and we are being lied to about the effects of hormonal contraceptive and mental health.

This journal article on cervical screening, compliance and moral obligation is of interest. I think the pressure on women to have screening as part of moral obligation is huge, and is immoral on behalf of the NHS. I also think the insistence of cervical screenings, often despite the woman being visibly distressed, is about far more than helping us ‘fight cancer’. I think it is the compounding of the docile compliant female body who shouldn’t ask questions and can’t say no. If it wasn’t maybe we would be given better information and the reasonable ability to opt out. If this was really about science, we would be having open discussions about the findings of Raffle’s BMJ study, and we would be seeing lots of more research critiquing screening.

And for those that will say “But this is science”…The late nineteenth century saw a proliferation of increasingly extreme gynecological surgeries performed on women deemed neurotic or hysterical. In 1881, it was perfectly acceptable to talk about the need of clitoridectomies (now known of course, as female genital mutilation. We started that). I also agree with this from the same blog (Arnold-Foster, 2014) “Many historians have since written about nineteenth-century medical ideology’s insistence on the pathological (inherently diseased) nature of woman“. I believe this remains. And women who object are positioned as neurotic and hysterical. The more things change, the more they stay the same.

Science is ever-evolving and changing. We need a non-invasive way to screen such as urine tests and home tests, and we need to stop many of the lies.

If anybody has further links to critiques of cervical screening and the ‘science’ behind them, please do give me a tweet @princessjack.

If any of these issues have upset or triggered you, please see the following websites. Please know that you are not alone.

National Association for People Abused in Childhood

Rape Crisis UK

PDST-Mind

Vulval Pain Society

Understanding Endometriosis

Consent and Opting Out of Cancer Screening

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