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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To highlight that up to 8% of Cervical Cancers are HPV-independent?

115 replies

ThisPithyJoker · 18/04/2025 19:40

Until I was diagnosed with HPV-indepedent pre-cancerous changes, I had no idea they existed. The NHS has moved to primary HPV testing, so smears will no longer catch them. I think it's important that this is made clear so that people don't disregard symptoms (e.g. bleeding between periods or after sex) because they're up to date on their smear tests. I'm not positive that 'smear' is even the correct term anymore for the regular testing at the GP as this is now only an HPV test. Since the introduction of the HPV vaccination, the proportion of HPV-independent cervical cancers is increasing (as HPV caused ones are decreasing, not because there are more cases).

I want to shout it from the roof tops, but I also don't want people to think that going for their regular check ups aren't vital. They are - they still catch 90%+ of potentially pre-cancerous cell changes via referral to colposcopy following an HPV diagnosis. So I'd like to start a conversation about it.

YABU - wider awareness of HPV-independent cervical changes and cancers could dissuade people from getting their regular cervical screening thinking it isn't conclusive since the move to HPV testing

YANBU - do everything I can do to get the message out that an HPV negative result at screening doesn't mean you don't have cell changes or indeed cancer

OP posts:
BurntBroccoli · 20/04/2025 22:08

Spittykityy · 20/04/2025 12:15

Hello Burnt Broccoli! Indeed I have read Margaret McCartney! My journey started when I decided I didn't want any more smears and Literally googled stop the smear test letters. That's how I learned I could opt out. Then I saw other links about the smear test, and an article by Margaret and ordered her book. I just think it very sad more women don't accept anything but the " you must have smears" line. At least read and look what's out there. If you still want to go, fine. Or if you'd go whatever, fine. Let's at least have some more options out there

Absolutely - it should be a woman’s own choice and we shouldn’t be almost bullied into a test every time we want to see a GP for another completely unrelated issue.

MeetMeAtTheAPT · 21/04/2025 00:07

Spittykityy · 20/04/2025 18:35

ThisPithyJoker she did go regularly for smears! She maybe wasn't as vigilant as she should have been following up her last abnormal results, she went into the Celebrity Big Brother India house and was informed there she had to leave and come back home for treatment. She said she honestly couldn't bear the thought of more painful cells removal and cervix treatments. And the adenocarcinoma had really gone wild in the meantime. It's honestly a myth she never had smears. I read her book.

No one said she didn't have smears. I was praising her as her diagnosis encouraged others to go for their smear when they wouldn't have before. She increased the numbers of people going for them by raising awareness.

Also, her cancer likely wouldn't have been picked up with the newer hpv testing. It was detected using the old style smear.

EBearhug · 21/04/2025 00:25

It is still worth going. The nurse does a visual check as well. I assume my polyp would gave grown and given symptoms at some point, but it was seen and removed because the nurse spotted at my smear.

I have seen my vulva with a mirror. I am not convinced I would be able to see my cervix.

BurntBroccoli · 21/04/2025 10:39

EBearhug · 21/04/2025 00:25

It is still worth going. The nurse does a visual check as well. I assume my polyp would gave grown and given symptoms at some point, but it was seen and removed because the nurse spotted at my smear.

I have seen my vulva with a mirror. I am not convinced I would be able to see my cervix.

You would need a speculum and perhaps use the torch light on your phone?

JoyousEagle · 21/04/2025 11:06

BurntBroccoli · 21/04/2025 10:39

You would need a speculum and perhaps use the torch light on your phone?

I can’t really tell if you’re being serious?
A poorly angled picture on a phone that is then looked at by someone not medically trained is not going to be a good way for someone to tell if their cervix looks ok.

BurntBroccoli · 21/04/2025 11:31

JoyousEagle · 21/04/2025 11:06

I can’t really tell if you’re being serious?
A poorly angled picture on a phone that is then looked at by someone not medically trained is not going to be a good way for someone to tell if their cervix looks ok.

Yes I’m being serious!

https://www.beautifulcervix.com/cervix-photo-galleries/

If you look at the photo galleries on this website you can clearly see the difference between a normal cervix and those that aren’t. I just think women need to be more informed about their own bodies. I suspect some won’t have ever even looked at their own vagina.

Sidge · 21/04/2025 13:38

@BurntBroccoli do you realise that those pics of cervices on that website involve the use of speculums? So unless women plan to buy and use them they’re not going to see much at all.

I’m all for women becoming empowered in their care and becoming confident in their anatomy but I think swerving smears and relying on self assessment is a dangerous path to follow. Christ even experienced HCPs refer on to gynae/colposcopy when they’re unsure as to what’s going on with a cervix, let alone expecting women to know. It could go either way, with women becoming unnecessarily anxious or unnecessarily falsely reassured.

I’ve seen a woman worried that she had a lump “down there” (it was her clitoris), a woman panicking because she had stuff in her knickers (it was normal vaginal discharge) and all sorts of other issues that would be resolved if women were more knowledgable about their bodies. But carrying out their own cervical assessment? No.

Sidge · 21/04/2025 13:43

ohdearohnooh · 19/04/2025 20:11

@Sidgeall my “smears” have always been clear. Last one was a HPV one. Have not had sex since. Am 51. Is there any point in me going for another HPV “smear”. Just received text from dr that I am due one.

if there is any point, please can you tell me what the point is? Is it that the nurse will do a visual examination of cervix to look for any changes? If so, surely this is prone to missing important changes that are hiding or next yet visible?

I would never suggest a woman didn’t attend for screening. Occasionally women can have low levels of HPV that are undetected, (a negative, or normal result) which spontaneously can increase and then allow detection at a next screen.

I would imagine your risk of HPV is low, but not no risk.

The nurse cannot see undetectable changes, (or HPV). She can see the cervix as it is at the time of sampling.

Allthesnowallthetime · 21/04/2025 14:07

Thanks for the reminder, OP.

I don't think cervical smears ( cytology) have ever been thought useful in preventing adenocarcinomas of cervix? But can pick it up at an earlier stage.

Carcinoma in situ being picked up by smears is usually the squamous type of carcinoma, not adeno.

This article is helpful:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4915496/

Useful to be reminded that screening, while helpful, isn't 100 percent effective in preventing cervical cancer.

Is cervical screening preventing adenocarcinoma and adenosquamous carcinoma of the cervix? - PMC

While the incidence of squamous carcinoma of the cervix has declined in countries with organised screening, adenocarcinoma has become more common. Cervical screening by cytology often fails to prevent adenocarcinoma. Using prospectively recorded ...

https://pmc.ncbi.nlm.nih.gov/articles/PMC4915496/

Annoyeddd · 21/04/2025 14:20

Unfortunately the NHS tests are set up to detect the easy wins and to capture the greater numbers.
Those 8% of non viral cases will just have to watch out for symptoms - bleeding between periods or post menopause.
Same with bowel cancer the screening test doesn't pick up everything and people need to watch out for changes in bowel habit and younger people do not get screened.
Mammograms do not pick up everything and the monthly breast check is still important and screening does not extend to younger and (dare I say it on Mumsnet trans people who are not included on the list for screening).

BurntBroccoli · 21/04/2025 15:44

Sidge · 21/04/2025 13:38

@BurntBroccoli do you realise that those pics of cervices on that website involve the use of speculums? So unless women plan to buy and use them they’re not going to see much at all.

I’m all for women becoming empowered in their care and becoming confident in their anatomy but I think swerving smears and relying on self assessment is a dangerous path to follow. Christ even experienced HCPs refer on to gynae/colposcopy when they’re unsure as to what’s going on with a cervix, let alone expecting women to know. It could go either way, with women becoming unnecessarily anxious or unnecessarily falsely reassured.

I’ve seen a woman worried that she had a lump “down there” (it was her clitoris), a woman panicking because she had stuff in her knickers (it was normal vaginal discharge) and all sorts of other issues that would be resolved if women were more knowledgable about their bodies. But carrying out their own cervical assessment? No.

Yes - I realise that the images were taken using a speculum. I mentioned that it would be needed upthread.

Women could do a physical check on themselves every six months or so, together with an HPV swab every 2 years. Due to the fact that they were observing themselves regularly, surely they would be able to notice more changes than someone who hadn’t seen their cervix before?

AJLOAL · 21/04/2025 19:20

I wonder how many men would consider the advice to insert something up their ass to check their prostrate every 6 months 🙄

Spittykityy · 21/04/2025 20:49

I've just seen an online report in the Evening Standard that if the screening committee agreed, HPV self testing will be starting to be rolled out next year. I know it won't help those who had dodgy cells and no HPV but it could persuade more women to self test

BurntBroccoli · 21/04/2025 20:56

AJLOAL · 21/04/2025 19:20

I wonder how many men would consider the advice to insert something up their ass to check their prostrate every 6 months 🙄

Entirely their prerogative and I’m sure many do anyway for other reasons!

BurntBroccoli · 21/04/2025 20:57

Spittykityy · 21/04/2025 20:49

I've just seen an online report in the Evening Standard that if the screening committee agreed, HPV self testing will be starting to be rolled out next year. I know it won't help those who had dodgy cells and no HPV but it could persuade more women to self test

That’s excellent news!

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