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

[ThisPithyJoker]

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

Thank you.

If it's not picked up in a routune smear how do you find out?

Do you have to say to your GP it's a concern if you present with those symptoms or will it be something they would raise themselves.

I agree wholeheartedly but unfortunately the fact remains that cervical changes will be missed in a large number of women, even if they do go for their check. I was CIN 3 and HPV negative. Thank goodness it was 15 years ago and I’ve since had my cervix removed. Women these days wouldn’t stand a chance. How long before they begin to notice cervical cancer rates increasing?

I’ve long worried about this also if you are HPV negative on a smear there’s nothing stopping g you from getting it on next encounter.

It's something you should raise with your GP. I have had the nurse ask whether I've had those symptoms before, while I've been getting a smear, but didn't at my last one so I don't know if it's policy or not

In the case of changes caused by HPV, the time it takes between contracting HPV and this causing cell changes should be long enough that the next HPV should catch it before it's progressed very far.

Thankyou, a very important message that all a routine smear will do it highlight the presence of HPV.

If you have symptoms of bleeding between periods or after sex, insist on an examination with speculum or colposcopy

can I ask where you get 8% from? Cancer research says 99% caused by Hpv

Would you mind me asking whether your cervix was removed due to the CIN3 or was unrelated? I had a rare type of CGIN (GAS in situ) and hysterectomy appears to be the safest route given it is very aggressive if it advances but this wasn't suggested to me initially as treatment due to my age.

Can you get a private smear where they check the cells if you’re hpv negative ?

I've seen this quoted before but I believe that percentage predates widespread HPV vaccination. Different papers report different proportions (hence the 'up to' in my title) but the attached review references several more modern papers.

You can. After I'd had treatment for my condition, I was encouraged to do just that by the consultant to get Test Of Cure as the NHS Test of Cure was (you guessed it) an HPV test. In the end I managed to get a second opinion and another consultant contacted the lab to request that cytology was performed regardless of HPV status.

I’m another one who who was cin 3 and hpv negative, this was 13 years ago now. Why did they change it to only test for hpv, it makes no sense.

No, I just had the LLETZ at the time, and annual checks at the Colposcopy clinic for a few years. I had a hysterectomy for adenomyosis but I asked that my cervix be removed as well because since they’ve changed the ‘smear test’ (it gets right up my nose that it’s still called a smear test when it isn’t) I’ve been worried about further changes being missed.

CIN is not cancer. So not included in stats.

99.7% of cervical cancers are caused by HR-HPV.

Obviously women receive treatment for CIN, some of which may be HR-HPV negative, but most are positive.

It’s only colloquially called a smear test - we refer to it as primary HPV screening.

I have had high risk HPV in the past which was picked up in a private smear. This was about 15 years ago. I never had any CIN on the old style smears. Another smear (abroad) 8 years ago was HPV negative with no cell changes and my 2 most recent smears have been HPV negative and therefore not checked.

Does anyone know does this mean I’m not safe from that initial HPV infection? I’m worried that I’ve had it and cleared it but that maybe it can still do harm which now won’t be detected?

There's a difference in HPV prevalence between squamous (CIN) and adenocarcinoma (CGIN) changes and the associated cancers, though. CIN is usually HPV associated (although not always, as previous posters have mentioned in relation to themselves), but it's more common for CGIN to be HPV-independent.

The 99.7% figure comes from a 1999 paper. The current WHO accepted figure is 95%. It's changed very rapidly since the introduction of the HPV vaccination.

I really think it’s scandalous that women are put through an invasive procedure for zero reason (if they test negative). I’ve had a HPV swab test, and it’s nothing like a smear (no speculum needed). Why oh why is no one shouting from the rooftops about this?

A friend of mine died from this. They thought it was either menopause or a gastrointestinal issue and chemo and radiotherapy couldn’t save her.

If you have symptoms, you make a GP appointment for investigation. That has always been the case.

Cervical screening has never been a diagnostic tool for a patient presenting with symptoms, it's population screening to identify pre-symptomatic issues.

I agree, but this is women's healthcare so...

I think I really meant is this on gp's radar or would I need to say 'could it be this please look specifically at this'.

I have these symptoms and I have been told its probably perimenopause, but haven't had any investigations.

I know. That’s why I said CIN is not cancer. The most important thing is that women attend for screening. HPV screening will still identify the vast majority of CIN changes and allow early intervention to prevent invasive changes.

It should be on a competent GP's radar, yes. It's their job to recognise and evaluate risks of cancer when a patient presents with symptoms.

If you are concerned and have received no investigations of any kind before they shrugged and said "probably perimenopause" then you would be well within your rights to go back and push.

This is why I'm not going for smears any more. There's no real way I could catch HPV and that's all they're testing for, so there's no point in me having one.

It’s not zero reason. It allows for a visual examination of the cervix and detects HR-HPV infection as well as allowing sampling of the cervix in case cytology IS needed.