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

ThisPithyJoker · 2025-04-18T18:40:08+00:00

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

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!

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!

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

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 🙄

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?

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).

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/

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.

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.

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.

Show quote history

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.

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?

Show quote history

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 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?

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.

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.

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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.

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.

ArseofOrion · 20/04/2025 21:02

I had CIN3 in 2013. When the results from the smear came back there was no mention of being HPV positive or negative just that the cells were abnormal. I had a chunk of my cervix removed and then they retested and advised there was no HPV present.
i was really confused as by this as assumed I would have HPV. Anyway the doctor advised that I likely had it but by the time the latter smear was done after the abnormal cells had been removed then the virus was dormant again and therefore wasn’t coming up on the test.

essentially what the doctor said is that you can have it and then it lie dormant for years before potentially flaring up again.

I’ve only ever had the HPV tests since then which have all come back negative so no further action taken. I can only hope nothing bad is going on!

Spittykityy · 20/04/2025 20:27

Personally I feel women have been given a lot of misinformation and gaslighting about smears. To try and increase uptake we have had : the crying child NHS poster, my mummy missed her smear test now I miss my mummy, anyone remember that? Women being deregistered from their GP for refusing a smear, being denied contraception, asthma inhalers or even an appointment for anything until they have a smear, and Jade Goody. People think Jade didn't have smears, they don't know the full facts about her, but it was obviously a win win situation women flocking to have smears. I believe uptake has slid down again now

Spittykityy · 20/04/2025 18:35

ThisPithyJoker · 20/04/2025 18:08

Oh it's interesting that Jade had adenocarcinoma. A higher proportion of those are thought to be HPV-independent (15-38%) so while the 'Jade affect' on increased screening uptake will have saved a lot of lives, it's interesting to think that a modern test may not have caught early changes even if she had gone religiously.

Show quote history

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.

Original poster

ThisPithyJoker · 20/04/2025 18:08

Spittykityy · 20/04/2025 17:16

Jade had Adenocarcinoma a particularly aggressive form of cervical cancer mainly seen in younger women. To be honest the smear test doesn't always pick it up and it's so aggressive it could develop really quickly between smears. Jade had regular smears. For some reason she also had her first cells burnt off at just 16 years of age. She had more cells burnt out after this too, and had adhesions on her bowel. I will always wonder what part over treatment had to play in her truly awful end and what damage was done by all the burnt off cells. One reason the screening age was raised was because younger women were being harmed by over treatment

Show quote history

Oh it's interesting that Jade had adenocarcinoma. A higher proportion of those are thought to be HPV-independent (15-38%) so while the 'Jade affect' on increased screening uptake will have saved a lot of lives, it's interesting to think that a modern test may not have caught early changes even if she had gone religiously.

OP posts:

FedupofArsenalgame · 20/04/2025 17:51

Spittykityy · 20/04/2025 15:31

FedUpOfArsenalGame:
Firstly I wrote to my GP and said I would not be attending my smear (I had just been "invited".) I said I wanted to opt out, that I wanted no more communication from ANYONE about smears, that I wouldn't sue if I went on to develop cancer, and if I had any vaginal worries or worrying symptoms I'd book an appointment. I got the disclaimer back to sign, but I don't think they processed it as I then had an "invitation" from the health authority, so I sent a registered letter stating the same and got the reply I'd been opted out. Maybe a really REALLY strongly worded letter sent registered post to your GP and health board? Must be truly awful to have to be reminded like that when you don't have the parts to be smeared

Good job I don't get stressed about such things isn't it? For me it's irritating but others may react badly to such communications

Spittykityy · 20/04/2025 17:16

MeetMeAtTheAPT · 18/04/2025 23:08

Yes so all of us oldies 35+ that didn't receive the hpv vaccine, just don't matter.

I commented on another post this week to state that the non hpv cancer rate is between 3-11% in the uk. This is not a small number of women.

The 'population' is much more than the under 35's (the vaccine was rolled out for this age and below.)

I'm another hpv negative case that had CIN3 cells. Thankfully it was when the old style test was routine and it was picked up on my first ever smear.

Also thank you to Jade Goody for the "Jade Goody effect" she saved a good few lives when her diagnosis increased the uptake for the smear test.

I now pay for private smear tests as I've always been hpv negative but the risk is still very much there.

Show quote history

Jade had Adenocarcinoma a particularly aggressive form of cervical cancer mainly seen in younger women. To be honest the smear test doesn't always pick it up and it's so aggressive it could develop really quickly between smears. Jade had regular smears. For some reason she also had her first cells burnt off at just 16 years of age. She had more cells burnt out after this too, and had adhesions on her bowel. I will always wonder what part over treatment had to play in her truly awful end and what damage was done by all the burnt off cells. One reason the screening age was raised was because younger women were being harmed by over treatment

Spittykityy · 20/04/2025 15:31

FedUpOfArsenalGame:
Firstly I wrote to my GP and said I would not be attending my smear (I had just been "invited".) I said I wanted to opt out, that I wanted no more communication from ANYONE about smears, that I wouldn't sue if I went on to develop cancer, and if I had any vaginal worries or worrying symptoms I'd book an appointment. I got the disclaimer back to sign, but I don't think they processed it as I then had an "invitation" from the health authority, so I sent a registered letter stating the same and got the reply I'd been opted out. Maybe a really REALLY strongly worded letter sent registered post to your GP and health board? Must be truly awful to have to be reminded like that when you don't have the parts to be smeared

FedupofArsenalgame · 20/04/2025 12:19

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

How do you stop the letters? I had a radical hysterectomy 3 years ago but still get the smear test letters regularly. Both spoken and written to my GP surgery about them but still they still come. They can't do a cervical smear as I have no cervix and get my check ups through oncology

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

BurntBroccoli · 20/04/2025 12:04

Spittykityy · 20/04/2025 10:54

I've followed a lot of cervical screening posts. I'm not saying who's right or wrong, but I do disagree with posters saying stuff like, " if women say they don't screen, or that the test is worthless now it only checks for HPV it will make others decide it's fine not to go."
Actually, women aren't stupid. I've never actually seen anyone out and out saying, don't go, you shouldn't go. If anyone tried to post this I suspect moderators would remove. I've seen women say , I don't screen, and sometimes they explain why, and embarrassment and being scared of the pain isn't as frequent as might be expected. I personally don't screen and have opted out completely. I'm not about to suddenly opt back in and have a smear because people I don't know on Mumsnet tell me I should, and I'm sure it's vice versa too.
Also, the smear test was never put through random controlled trials, it was just rolled out. I read that if it hadn't been invented at all, but was suddenly invented now it wouldn't have passed the criteria to become a screening programme. Also that any screening test should be acceptable to the target population in this case women. Now we have a self test why not offer to non screeners? Surely anything is better than not screening at all, and some non screeners might accept a self test

I agree. We should definitely have the self test option and not have to pay privately.

Have you read the Margaret McCartney book too?