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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Cervical Smears-Not to Go?

377 replies

B1rthdayD1lemna · 30/05/2025 21:10

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.

OP posts:
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Walkaround · 31/05/2025 21:39

cardibach · 31/05/2025 20:51

And what about the cancers not caused by HPV? Because it was made very clear when my daughter had the vaccine that it didn’t prevent all cancers.
Edit: they weren’t always just looking for HPV. They were looking for cell changes. I’m 60. I’ve read the info for a lot of years now.

Edited

HPV vaccination is neither 100% effective against the strains of hpv it is designed to prevent (although it is a highly effective vaccine), nor does it protect against all strains of hpv which have been linked to cervical cancer. It is therefore still possible to get hpv-related cancer and was therefore correct to point out at time of vaccination that it did not prevent all cervical cancer and that smear tests were still recommended (but research has shown the vaccine is so effective against the highest risk hpv strains that less frequent testing is possible). In the absence of hpv, your chances of getting cervical cancer are tiny - you are far more likely to get another type of cancer altogether. The cancers that are dramatically increasing, particularly in young people, are bowel cancer and head and neck cancers, not cervical cancer.

cardibach · 31/05/2025 21:41

Walkaround · 31/05/2025 21:08

They were and are looking for dyskariosis - a specific type of cell change. They are not a diagnostic test, they are a screening test, and what they are screening for is hpv-related cell changes. They might also, incidentally, pick up a thrush infection, or other type of infection, but it would be foolish to rely on them for something they were not designed to detect. That’s why there are different tests for other infections and cancer.

No, they are testing for HPV. They don’t look at the cells if it isn’t present. That’s what I’ve been told/read in medical paperwork.

Walkaround · 31/05/2025 21:44

cardibach · 31/05/2025 21:41

No, they are testing for HPV. They don’t look at the cells if it isn’t present. That’s what I’ve been told/read in medical paperwork.

No - they always do an hpv and smear test. The smear test is looked at if the hpv test comes back positive. The smear is not looked at if there is no hpv detected, because there is no point looking for something you already know isn’t there.

Walkaround · 31/05/2025 21:48

A competent smear taker may see evidence of thrush, other infections and abnormalities, without the need of a microscope. They could then offer tests for those, without needing to send cytologists off in a wild goose chase looking for non-existent hpv.

cardibach · 31/05/2025 22:01

Walkaround · 31/05/2025 21:44

No - they always do an hpv and smear test. The smear test is looked at if the hpv test comes back positive. The smear is not looked at if there is no hpv detected, because there is no point looking for something you already know isn’t there.

That’s what I said. They don’t look at the cells unless you test positive for HPV. Despite some cancers not being caused by HPV. Despite them having the cells.

BelaLug0si · 31/05/2025 22:02

Walkaround · 31/05/2025 21:44

No - they always do an hpv and smear test. The smear test is looked at if the hpv test comes back positive. The smear is not looked at if there is no hpv detected, because there is no point looking for something you already know isn’t there.

It’s dyskaryosis.

As in my previous posts. One sample is taken at the appointment, this is the ‘smear’ test.
The sample is tested for high risk HPV. If high risk HPV is found then the same sample is processed to put the cells onto to a slide so they can be examined under a microscope. The slide is not made if high risk HPV is not found.
The HPV test is a molecular test. More info here https://pmc.ncbi.nlm.nih.gov/articles/PMC9092940/
The slide based test is cytology.

Molecular Detection Methods in HPV-Related Cancers - PMC

Human papillomavirus (HPV) is responsible for most cervical cancers and some head and neck cancers, including oropharyngeal squamous cell carcinoma and sinonasal carcinoma. Cervical cancer is commonly diagnosed by liquid-based cytology, followed by ...

https://pmc.ncbi.nlm.nih.gov/articles/PMC9092940/

BelaLug0si · 31/05/2025 22:03

cardibach · 31/05/2025 22:01

That’s what I said. They don’t look at the cells unless you test positive for HPV. Despite some cancers not being caused by HPV. Despite them having the cells.

Please read the links I posted about the principles of screening and the national screening committee evidence. The decision and moving to primary HPV may have been after your daughter was vaccinated.

FedupofArsenalgame · 31/05/2025 22:06

Notsuchafattynow · 31/05/2025 20:09

If waiting until symptoms appeared enabled successful treatment, don't you think the NHS would scrap smears?

Identifying cancer early is the biggest factor in surviving.

But you do you.

Yeah I had cervical cancer and had zero symptoms

Preachscreen · 31/05/2025 22:09

As a health care professional I have nursed end of life patients with cancers including the type identified by smears, they have been of all ages. I think you need to ask yourself this.....would you want to be that statistic and undergo gruelling treatment, which may or may not be successful when this risk could be signifanctly reduced through early identification and a smear test that takes seconds.......

TheMagicDeckchair · 31/05/2025 22:09

I had my first abnormal smear some years ago. It was moderate dyskaryosis and I went for a colcoscopy and biopsy. The changes were borderline and because I hadn’t had children yet, they decided to do a wait and see approach. I had another examination and further frequent smears and the abnormality cleared up, no treatment needed.

I do remember the anxiety I suffered with that first abnormal smear (I had another borderline one later, again that also cleared up) but I was reassured by having regularly attended smears- that because I’d been regularly tested, my chances of being easily treated were very high. Regular screening gives a very good prognosis.

I know of someone that died from cervical cancer very young (under 25) so I have always attended my smears.

Is there someone you would trust to go with you for the smear, or when opening your results? My mum came with me for my first examination which helped a lot.

FedupofArsenalgame · 31/05/2025 22:11

TreeDudette · 31/05/2025 20:59

I’ve had 2 positives and then the resulting treatment. Both were for early signs of cell change. No one can tell me of theyd have resulted in cancer or when but they bloody can’t after they’ve been scraped off and the area cauterised! It wasn’t my best day ever but it was over with in under an hour and I walked back to the car. Way better than cervical cancer!

It doesn't prevent cancer, I had that done in2021, had to go for a smear the following year, more dodgy cells. Biopsies and diagnosed withCC . The cells were growing from inside my cervix where they couldn't see

ChocolatesAndRainbows · 31/05/2025 22:16

It’s your life, your health and your choice….i hate it but I don’t wanna die of cervical cancer so I go…I don’t know what informed choice you need?

Tbrh · 31/05/2025 22:19

Haven't RTFT. My friends, friend died of this at age 40. Found out, and died within the year, leaving her son without any parents. So at your risk?

B1rthdayD1lemna · 31/05/2025 22:46

TheMagicDeckchair · 31/05/2025 22:09

I had my first abnormal smear some years ago. It was moderate dyskaryosis and I went for a colcoscopy and biopsy. The changes were borderline and because I hadn’t had children yet, they decided to do a wait and see approach. I had another examination and further frequent smears and the abnormality cleared up, no treatment needed.

I do remember the anxiety I suffered with that first abnormal smear (I had another borderline one later, again that also cleared up) but I was reassured by having regularly attended smears- that because I’d been regularly tested, my chances of being easily treated were very high. Regular screening gives a very good prognosis.

I know of someone that died from cervical cancer very young (under 25) so I have always attended my smears.

Is there someone you would trust to go with you for the smear, or when opening your results? My mum came with me for my first examination which helped a lot.

Thanks for sharing

OP posts:
B1rthdayD1lemna · 31/05/2025 22:52

Preachscreen · 31/05/2025 22:09

As a health care professional I have nursed end of life patients with cancers including the type identified by smears, they have been of all ages. I think you need to ask yourself this.....would you want to be that statistic and undergo gruelling treatment, which may or may not be successful when this risk could be signifanctly reduced through early identification and a smear test that takes seconds.......

When I started this thread I was just trying to get some more info around the risk of over diagnosis with the smear test and so was just gathering info. PPs have helpfully shared info and experiences.

I can’t speak for other women, although some of them have set out their reasons for not wanting to take part in screening and they seem comfortable with their decisions.

I did try to explain in posts above why this isn’t necessarily straightforward as someone who has suffered from severe health related anxiety in the past leading to being actively suicidal. So it’s balancing a known risk against another risk. I have said I think I will have a smear but time it during a period that’s likely to be less stressful.

OP posts:
Walkaround · 31/05/2025 22:57

FedupofArsenalgame · 31/05/2025 22:11

It doesn't prevent cancer, I had that done in2021, had to go for a smear the following year, more dodgy cells. Biopsies and diagnosed withCC . The cells were growing from inside my cervix where they couldn't see

It’s a question of probabilities, not certainties. The majority of women never need treatment for dyskariosis. Of those who do need treatment, the majority only ever need to be treated once. For those who have abnormal cells redevelop after one treatment, or whose cells were not fully visualised and removed the first time around (eg because they were higher up in the endocervix, or in more than one location on the cervix), the probability of the second treatment being successful is a bit lower than the probability that the first treatment would be successful, because the probability is measured at population level, it is not a personal probability measure.

It’s simply a fact you can never be certain what is best for you personally when it comes to screening tests and treatments. When it comes to over-treatment, though, I would be more terrified of the long-term effects of over-treatment for cancer than the long term effects of over-treatment for pre-cancer. Cancer treatments are brutal and aggressive. The removal of lymph nodes “just in case” can have long term negative consequences. The long-term harms caused by radiotherapy and chemotherapy are well known and obvious.

B1rthdayD1lemna · 31/05/2025 22:59

Walkaround · 31/05/2025 22:57

It’s a question of probabilities, not certainties. The majority of women never need treatment for dyskariosis. Of those who do need treatment, the majority only ever need to be treated once. For those who have abnormal cells redevelop after one treatment, or whose cells were not fully visualised and removed the first time around (eg because they were higher up in the endocervix, or in more than one location on the cervix), the probability of the second treatment being successful is a bit lower than the probability that the first treatment would be successful, because the probability is measured at population level, it is not a personal probability measure.

It’s simply a fact you can never be certain what is best for you personally when it comes to screening tests and treatments. When it comes to over-treatment, though, I would be more terrified of the long-term effects of over-treatment for cancer than the long term effects of over-treatment for pre-cancer. Cancer treatments are brutal and aggressive. The removal of lymph nodes “just in case” can have long term negative consequences. The long-term harms caused by radiotherapy and chemotherapy are well known and obvious.

Edited

Thanks. I think this is a really thoughtful response

OP posts:
ELS20 · 31/05/2025 23:10

Please, please do not miss your smear test. I’ve had some unpleasant experiences but I would NEVER miss my appointment. When I was only in my twenties they found high risk cells which I had to have removed. If I hadn’t had my smear, it could have developed into cervical cancer. Please have your appointment.

Jumpingthruhoops · 01/06/2025 03:47

cardibach · 31/05/2025 20:03

Smear tests used to test for abnormal cells. Now they don’t. It’s not an improvement.

100% this! I can't understand how they think saying they now screen for less will encourage take-up in more people!

Walkaround · 01/06/2025 05:31

Jumpingthruhoops · 01/06/2025 03:47

100% this! I can't understand how they think saying they now screen for less will encourage take-up in more people!

That’s just a silly response, given that the current testing regime is more accurate and effective at preventing cervical cancer than the old smear-only test. You are basically complaining about an improvement, because you imagine there is a greater benefit to paying someone to look carefully at cells of symptomless people who are hpv-free in the hope of finding something non-specific than there actually is. The taxpayer is generally averse to paying for tests in healthy people “just because I’ve got the cells now and testing them for hpv isn’t enough, I also want someone to stare at them, regardless.”

Renabrook · 01/06/2025 05:39

Yeah and if something goes wrong in the future the nhs has to pick up the pieces of people too lazy to get medical checks done in the first place, people expect the nhs to solve everything but never want to put effort in themselves

Sortumn · 01/06/2025 09:37

FedupofArsenalgame · 31/05/2025 15:57

This is very recent though. It was a full smear in 2021 when I last had one

Did they test your full smear for cell changes? Or did they perform a full smear but only test it for HPV?

In 2020 I had a private swab HPV test as I wasn't prepared to put myself through a full smear, given the literature I had been sent about how the NHS in my area processed smear samples.

They still perform full smears but test for HPV first and only if HPV found will process the test further. It's the processing that has changed

Sortumn · 01/06/2025 09:55

Preachscreen · 31/05/2025 22:09

As a health care professional I have nursed end of life patients with cancers including the type identified by smears, they have been of all ages. I think you need to ask yourself this.....would you want to be that statistic and undergo gruelling treatment, which may or may not be successful when this risk could be signifanctly reduced through early identification and a smear test that takes seconds.......

What are your feelings on the way a smear is taken? Would you prefer to see full testing of that sample rather than just HPV testing as it stands with no further testing for dyskaryosis in the absence of HPV virus?

Do you think giving women a choice of a self swab with follow up if HPV present OR full smear will lead to better or worse outcomes?

Sortumn · 01/06/2025 10:03

Walkaround · 01/06/2025 05:31

That’s just a silly response, given that the current testing regime is more accurate and effective at preventing cervical cancer than the old smear-only test. You are basically complaining about an improvement, because you imagine there is a greater benefit to paying someone to look carefully at cells of symptomless people who are hpv-free in the hope of finding something non-specific than there actually is. The taxpayer is generally averse to paying for tests in healthy people “just because I’ve got the cells now and testing them for hpv isn’t enough, I also want someone to stare at them, regardless.”

But they put women through the ritual of having to attend an appointment despite childcare and work issues.
Despite knowing it's painful and traumatic for some, rather than just a bit embarrassing and uncomfortable.

Despite knowing some women forego testing because of these issues and others, when offering a choice of self swab may increase uptake of screening, will be more convenient and may turn out less labour intensive.

Sortumn · 01/06/2025 10:05

Renabrook · 01/06/2025 05:39

Yeah and if something goes wrong in the future the nhs has to pick up the pieces of people too lazy to get medical checks done in the first place, people expect the nhs to solve everything but never want to put effort in themselves

It's rarely laziness. It's often sexual trauma, medical trauma, extreme pain and discomfort.

Writing women off as lazy doesn't encourage increased uptake.