Cervical Smears-Not to Go?

[B1rthdayD1lemna]

So I’ve always been very compliant with anything medical but after a number of really bad experiences (most NHS but some private) I’m now more sceptical.

I’ve been invited for my latest smear test, and inspired by another current thread on women’s health, I wanted to ask IABU if I don’t go?

I know for some people smears can be painful and even traumatic. I’ve been lucky not to have been in that situation. However, I am concerned about the downsides-mainly, the risk of false positives. Basically where something “abnormal” is treated but where it wouldn’t have actually caused harm. I think these are a recognised downside for preventative screening programmes, but I don’t know what the risk is for smears and breast screening. I’m not in an at risk group so far as I know. If I noticed a problem I would definitely get it checked out but just want to take a risk-based approach.

You would be missing a screening too if you don’t go.

@cardibach the screening programme is now for the prevention of high risk HPV related cervical cancer, which is in the invitation information. Non-HPV related cervical cancers are rare - population screening in the main is not designed the detection of rare cancers or diseases.
This is covered in the screening committee policy.
When the programme was cytology first, then HPV testing (for specific patient history and cytology results), not all of samples with abnormal appearing cells tested positive for high risk HPV. This is because some cytological changes are due to low risk HPV.
This review article suggests that the majority of non-HPV related cervical cancers are adenocarcinomas, and these comprise around 5% of cervical cancers. It notes that some non-HPV cervical cancers are actually endometrial in origin that have spread.
Due to the problems with endocervical canal access for sampling, i.e. you can't get all the areas, and issues in being able to interpret endocervical cells (they can be very difficult to assess), even if you made slides on HPV negative samples, non-HPV cancers will still unfortunately occur.
All screening tests have limits and none of them pick all instances of the target disease.

There's a registration link to be notified when the policy is up for review to have your say on this page. https://view-health-screening-recommendations.service.gov.uk/cervical-cancer/

The best informed choice is either have it or don’t and possibly end up like Jade.

@cardibach - in all honesty, I suspect that wording was just a gross simplification to make the message being imparted more compelling. If people were just told they should still have smear tests because no vaccination is 100% effective and that, in any event, not all hpv strains that can cause cancer are included in the hpv vaccine, only the most common ones, fewer people might bother with the vaccination, which would then reduce its effectiveness on a population level, so resulting in more cases of cervical cancer developing than would be the case with better uptake. Also, people obsessed with the idea that hpv is a sexually transmitted infection and who find that embarrassing, like the reassurance that cervical cancer is not always caused by sexual activity, so like that to be mentioned even though those cancers are not the ones the tests are designed for. This doesn’t mean smear tests were ever a good way to find the more rare forms of cervical cancer, or worth a screening programme of their own in terms of cases detected and lives saved. And once it had been clearly established how heavily hpv was implicated in almost all cervical cancers in the UK, and a highly accurate hpv test was developed, it wasn’t worth the massive cost of testing all samples for hpv and looking at all the cells collected under a microscope in a search for all possible abnormalities.

I know. As I keep saying. And I think it stinks. Look how many in this thread still believe that they are being screened for abnormal threads, not HPV. It’s opaque and it’s invasive.

It’s a cost benefit analysis which has failed to inform people adequately what is happening. It’s wrong.

Well do or don't. I think you've already made up your mind.

Just picking up your point on population level advantages which I think is interesting (not sure if you’re a HCP and might have more to add on this.)

I don’t think it’s a secret that some measures the NHS takes are worth it on a population level in terms of disease prevention but might not have the same benefits for a specific individual ( and might have downsides, such as side effects). I don’t want to quote numbers without being sure of the stats but I think the individual benefits of statins (unless you’ve had a cardiac event) are quite low. Although I assume over a population level would save quite a lot of lives and that’s why the NHS funds and promotes them?

I’m not saying it’s the same with the smear test, or that people shouldn’t have a smear or take up other health care offers, but some of the comments above are taking a bit of a naive approach I think in saying in a blanket way that anything the NHS funds will necessarily be of personal benefit to them without any possible downsides.

Its not just employers Check THIS out An HO saying a contractor visit must take priority over chemo.

HaudYerWheeshtYaWeeBellend · 24/01/2025 11:14

SharpOpalNewt · 24/01/2025 11:07
What if a tenant was unwell and in hospital, or had an urgent unmissable medical appointment for chemotherapy? Or someone dies and they were attending a funeral.
Oh well, I'm sure the compliance work must take priority over all other life events 🙄
Unfortunately compliance works will always take priority, it’s not only keeping the tenant safe but the neighbours and others around the property.
You’d be the first to complain if a house blew up or someone was electrocuted because the HA failed to ensure their properties were compliant.
This is not said to be scaremongering, they are the very reasons why they legally have to be completed because people have died or been injured.

In case my copy and paste does not make sense here is the page.

https://www.mumsnet.com/talk/am_i_being_unreasonable/5259390-housing-association-saying-im-unreasonable-i-dont-think-i-am?page=10

Yes-I posted above to say I think I will have the smear test but time it to avoid triggering my anxiety

How many people read the invitation leaflet? From many previous threads going back years on here, lots of people don't understand the difference between a screening and diagnostic test, or the limitations of screening. I recognise that it is difficult for people to get this.
The programme pages do have information about why to attend even if you've been vaccinated (because there's been several changes of vaccination type so the spread of high risk HPV types is wider).
https://www.nhs.uk/tests-and-treatments/cervical-screening/why-its-important/
The BSCCP site has useful, clear information https://www.bsccp.org.uk/women

Sasieni's group has published papers on cost-effectiveness, screening intervals etc. There's summary by CRUK here of introduction and changes to the NHS screening programme with relevant links.

To pick up on Walkaround's point, in addition to whether making slides on HPV negative samples are cost effective. The types of cancer (e.g gastric-type endocervical adenocarcinoma, clear cell, mesonephric, and endometrioid adenocarcinomas) that are non-HPV related are challenging to identify on cytology because they are rare and also appear in samples infrequently (before primary HPV) if they are present. The cells can be very difficult to distinguish from normal cells that means it's less reliable as a screening test for those conditions. Screening is not for rare sub-types. That's why it's important for anyone with symptoms to get prompt, appropriate investigations.

Jade had adenocarcinoma a particularly aggressive form of cancer which mainly affects younger women and she did attend smears. She had her first lot of cells removed at 16 !?
If you have a smear at the surgery it's sent off and first tested for HPV. If no HPV is found they don't check further. You can source an online kit for around £50 and check if you have HPV at home (swab on a stick checks for strands of HPV in vaginal secretions). If HPV detected you can decide from there what to do. While around 80@% of us will get HPV at some point, less than 1% of us will get cervical cancer. Lifetime risk 0.65%% jabbed or unjabbed smeared or not smeared. Even severely abnormal cells can revert to normal on their own without treatment, as yet medics don't know which so everyone is offered treatment. Some women value the visual check the nurse does while she's taking the sample. I opted out in 2015, informed decisions

I have had two smear tests in my life, both incredibly painful. I was told I was overreacting, that it's uncomfortable for all women, just get it over with.

Turns out I have Primary Vaginismus. I'm aware of how important screening is (thankfully the other two were both normal), and I often have small bouts of anxiety about not going for screening, but at the moment (young and single and not sexually active) it's not for me.

The choice is yours, at the end of the day.

Would you not have more health anxiety if you didn't go and had that constant 'what if?' looming over you? Chances are you're fine, and an all clear test would reassure you, surely?

I can’t speak for others, but that’s not how my health anxiety has been. It’s always been when I’ve been awaiting a procedure, there’s some actual health concern etc. I don’t currently have health anxiety as it’s well managed and I had to have a breast lump investigated. It was a bit of a worry in the back of my mind, but I was able to get on with the day-to-day whilst I waited for the investigative appointment. I assume this is a more “normal” reaction for someone who doesn’t have severe health anxiety. When I’ve had severe health anxiety, the health issue becomes an obsession and gets in the way of day to day activities. I’ve also become actively suicidal. I think it’s very hard for others, unless they have had it (which some PPs have) to understand how serious and debilitating it is. I’ve worked very hard with therapy and take medication so
its well-managed, but unfortunately like many serious mental health conditions, it can flare up and us difficult to control. Anyway, as mentioned above, I will likely have the smear but time it at a period of less stress.

Thank you for sharing how it feels for you. I presumed you would always be worried something was wrong, and I'd not thought about the anxiety presenting in a different way.

It sounds like you have plans in place to manage situations, so going at a less stressful time is a good solution. And congratulations on how you coped with the breast lump. Something like that can be all-consuming to people. Constantly on their mind buzzing away in the background. For me, I was like you - Worried but able to function in daily life.

IMO most readers would understand delaying until a less stressful time. It was you trying to use rubbish science excuses that got people wound up.

Best wishes ❤️

Dutch and Finnish women have been offered the home test for years now and are only followed up if they test positive for HPV. Their rates of CC and death rates are amongst the lowest in the world. They also start testing later at 30 as so many young women have HPV

Do you have more health anxiety about cervical cancer, or about all the other more common cancers, and other diseases, that you're not offered screening for?
I think a lot of the anxiety comes from the constant messaging and guilt tripping about how important screening is, when in reality there are many other things that are much more likely to kill you.
The way that women are encouraged to believe that their bodies are out to get them, and the infantilisng way we are herded along for screening tests is, in my view, a significant harm in itself. The fact that anyone who (often after a careful weighing of the pros and cons) chooses to opt out is told they are silly and should just get on with it undermines the principle of informed consent.
I think it is no coincidence that the only national screening programmes relate to female specific cancers. It's misogynistic.

Yes, so part of my question was about the pros/cons of screening-recognising that for at least some screening programmes there are risks of over-diagnosis and treatment for bodily changes that wouldn’t have otherwise caused harm. In the meantime people can have a lot of anxiety, go through treatment that isn’t actually needed in their case. I wanted to understand if/how this applies to cervical screening and some PPs have been really helpful on this. Including where they have sent info, explained how follow-up works, what their treatment was. I haven’t found responses along the lines of “you’re an idiot” that helpful tbh 😂

For me, I only get health anxiety where there is an actual or potential health issue e.g. waiting for results. So I wouldn’t be worrying about cervical cancer or other health issues if there was no symptoms.

Based on my family health history and current severe health condition, I’m more likely to die from something else. Unfortunately there isn’t much I can do about these

I wouldn't miss mine for anything but I would respect someone who preferred not to go, as long as they understood the possible consequences.

By the time you notice something you suspect may be wrong, it may already have been lurking unnoticed for weeks/months. Go. A false positive is to be welcomed. Its not positive. Go.

Obviously better than true positives, but false positives are not something to be welcomed.

I could have wrote this Op.I started reading this thread and must have missed the bit where you mentioned health anxiety and thought this woman surely has health anxiety due to her questioning and thought patterns. I have done all this research and work with statistics and figures as one of my coping techniques. I had chronic extreme health anxiety (ocd) for 15 years. I now have it under control . You learn how to mitigate against the health anxiety getting the better of you.

Good. I'm really pleased to hear that.