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

You know " putting " someone through a smear whilst uncomfortable and unpleasant is a lot less nasty that putting someone through a radical hysterectomy, radiation and chemotherapy

Women could be taught how to check their own cervix visually with a mirror and feeling for any unusual growths etc. This, alongside self swabbing at home for HPV would be a far better way of detecting any cancer early.

Yeah this isn’t a thing. Crikey it’s hard enough sometimes to visualise a woman’s cervix with a speculum and directed light, left alone expecting women to examine their own cervix! Half of my patients probably can’t touch their toes, let alone fold in half enough to find their cervix. And if you can feel a growth you’re probably in trouble. Also how will women know the difference between a polyp, an ectropion, a transformation zone and an abnormality.

Many of you seem to be forgetting that a cervical screen is just that - a SCREENING tool. It is NOT a test for cervical cancer, it is a tool to detect earlier cell changes that if left unchecked may one day become cancerous.

In all my years of taking smears, and I’ve taken about 10,000, when audited only one of mine had a cancer result. Anecdotal yes, but there just aren’t hundreds and hundreds of undiagnosed cancers out there especially in women attending for screening. There have been hundreds of referrals to colposcopy though. The system isn’t failsafe of course but as a screening tool it’s valuable and viable.

If you have bleeding between periods, and bleeding after sex, you need swabs for infection, investigation and referral to colposcopy. What you don’t need is a “smear” which is a primary HPV screen.

So would you say that a home test swab would be more beneficial than women having to go for a smear which is only tested for HPV now?

For that one case of yours, did you detect abnormality visually?

I think a home swab for HPV is better than nothing at all. And I like the idea of women having the choice of either standard cervical screening as it is, or a self swab for HPV as long as they understand if positive, they’ll need cytology I.e. a standard sample.

And yes I could see that woman had cancer. It’s very distinctive.

I’ve also referred probably hundreds of women to colposcopy alongside their screening due to my concerns at the appearance of their cervix, or because they had polyps.

I hadn't realized it was as low as that.

The error rate for smears is higher than that

I guess they will phase them out.

Very traumatic for a lot of women with past trauma for very little return

@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?

This is an excellent and very necessary thread. Thank you OP.

Just done a bit of Googling and came across a website which is actively promoting checking out your own cervix. The pictures are very clear and there is a gallery of photos with various conditions.

https://www.beautifulcervix.com/see-your-own-beautiful-cervix/

I expect you could get a decent enough photo nowadays using your phone with a video and torch setting. Obviously you’d need a speculum too.

Id never be able to bend myself into the correct angle

Selfie stick? If you took
a video you can create stills from that.

My doctor told me that you can test negative but still have the virus, and just not be "shedding" it.

Well seeing as I don't have a cervix anymore ( due to my insides ripped out to remove cervical cancer) I won't try. It's a lot more hassle than a smear test every few years and less reliable id say.

I too had CIN 4 non HPV pre-cancerous cells and had part of my cervix removed. This was about 17 years ago and it still bothers me that I no longer have regular smear tests but HPV tests.

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?

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

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

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

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

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.

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.

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

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!