To not understand smear tests.

[BooksandCats123]

I’m 43 and have never missed a smear test.
When I was 30 I had a cin 4 result. I had lots of appointments and was told by an oncologist that looking at my result he should be seeing a tumor of some sort but couldn’t.
I had all sorts of scams including an mri. It was decided that I’d have LLETZ procedure to remove cells and a smear test every 12 weeks then 6 months ect.
Over the years I’ve had the LLETZ procedure two more times.
I had a smear test recently and was told that they no longer look at cell changes unless a certain strain of HPV is detected. My result was negative I got my GP to check my notes and they say I was also HPV negative when I had all the issues 13 years ago.
When I raised concerns about this my doctor said that the HPV test 13 years ago must of been wrong, I wouldn’t have cell Changes without being positive and that there is no need to worry.
But I am, if 3-11% of Cervical cancer cases are from women who are negative (got this percentage from Google) how is it picked up on?
TMI but I had sex earlier with my DH and bled afterwards, I am waiting for a gynaecologist appointment (should be soon) because of pain during sex but the bleeding is a new thing.
When I had a scan in the summer it was suggested I might have Endometriosis and like I said the appointment for to confirm that is hopefully soon.
But bleeding and pain is a symptom of cervical cancer, my aunt had it and sadly didn’t survive.
I feel like my life is being put at risk here. Have I got it wrong or does this way of testing worry other women, where could I get a smear that looks at cell changes?

My treatment was in 2020 and it was based on the HPV screening result.
I actually don’t know if you can have a screening privately without it being HPV screening in first instance. This is something I will actually look into as I’m curious now.
HPV is very slow growing which is why they’ve changed the screening intervals now to 5 years for all age groups.

Having just been through the exact same procedure, I agree with this. It's certainly opened my eyes up to how cervical cancer, in its infancy is now treated so seriously. I won't be taking any risks with my gynaecological health again.

OP, I think I lot of people have the questions you do.

The thing about screening tests is that they essentially work on probabilities. What is the most efficient way to catch the most cases with the least false positives or over-treatment.

And the measure is statistically, how effective is the screening tool at extending the length of time people live. (So, maybe a tool catches more cancers but doesn't lead to better outcomes, so it's actually a waste of money.)

Just thinking out loud, it is possible to have cancerous cells without HPV. I think the odds are something like 2-11% of cervical cancer cases but please don’t quote me on that without doing your own research.
It is possible to see carcinoma cells on the cervix so perhaps that’s more the case, it would be a vaginal examination (GP most likely) rather than a smear.
Obviously I would hugely encourage anyone who has any abnormal bleeding, pain, discharge, cycle issues etc to see a GP or practice nurse (where qualified) in the first instance.

You can, but it won't spot any abnormalities on the cervix.

I hope this all went okay for you 💐

It's also worth remembering screening is only as good as the sample. I've seen cases where patients smears are "normal" yet they have abnormalities and it's usually assumed their HCP wasn't getting a really good sample from within the cervix when taking the smear and patients like this tend to stay under specialist care for their follow up smears in view of this. If professionals can sometimes not adequately get a good sample it does make me worry about home testing. It's a good alternative for those who won't be screened otherwise but it's not a perfect replacement to proper cervical screening imo

Also, it doesn't hurt to have someone look at your cervix.

If only that were true.

No tests are going to be 100% accurate with no false positives and no false negatives.

Yes, thank you. A simple ovarian cyst and normal blood test reading x

If I was you I would definitely pay…you wait for symptoms….you wait too long….chance any cancer could spread

Thank you, I understand now. When I was told there was no cure for HPV, I must have misunderstood and not been given all the relevant info. And thanks for the really great thread, OP.

Why have they changed it?

I wonder this too

I might be wrong but I think HPV can be spread from skin to skin contact, you can get it from holding hands or kissing and isn’t an STD.

Yes and no :)

Strains 16 and 18 (the strains that are closely assoc with cancer) generally aren’t the warty strains and generally or usually only spread through mucosal contact. But regular skin to skin transmission is possible just not as likely.

sorry hopefully not coming across as a know-it-all just have done a lot of research 😬

I don’t mind at all I’ve learnt a lot from this thread.
So does that mean if like another poster asked you’ve only had one sexual partner and there hasn’t been any infidelity that although the risk is small you could still have HPV and need to attend your smear test?
How about if a woman was a virgin but had kissed/had foreplay?

Oral sex and kissing (open mouth) along with all the other usual sexually transmitted ways is a possibility.

edit: I think HPV related throat cancer and mouth cancer is pretty common for this reason.

There was a time before the vaccines that it was just sort of assumed everyone had at one point or another. And that’s probably a true statement to a certain extent for anyone in their 40s or above. I’m 50 and just sort of shrugged at the idea of having it because odds are (and what turned out to be true)that I did.

Also wanted to add I love the great questions in this thread thanks @BooksandCats123 for starting it. It’s great to have an open discussion.

I really do mean it when I say HPV and wonky exam results aren’t reason to panic and I say that as a walking worse case scenario. HPV related cancers are very treatable. The important thing is to keep asking questions, researching reputable sources, know your body, and advocate for yourself with doctors.

Also to encourage teens in your circle (girls and boys) to be vaccinated.

Up to 11 percent seems a lot. Why did it change? Doesn't that mean that literally thousands of women have more chance of dying now, or am I misunderstanding it?

That was a little surprising to hear for me. I’m in the US and the guidelines literally just changed which I think are reasonable:

• Women age 21 to 29 should have a Pap test alone every 3 years. HPV testing alone can be considered for women who are 25 to 29, but Pap tests are preferred.
• Women age 30 to 65 have three options for testing. They can have both a Pap test and an HPV test every 5 years. They can have a Pap test alone every 3 years. Or they can have HPV testing alone every 5 years.
• After age 65, you can stop having cervical cancer screenings if you have never had abnormal cervical cells or cervical cancer, and you’ve had two or three negative screening tests in a row, depending on the type of test.

With those guidelines in mind ACOG (American College of Obstetricians & Gynecologists - who is one of the governing bodies who helped develop the guidelines) still recommending annual exams.

Too late to edit but 3300 cervical cancer diagnosis in the uk annually so ~330 non HPV cases using the 10% mark. But weirdly cancer uk is claiming 99.7% of cervical cancer is HPV related which doesn’t seem to jive with other stats I’ve read which is closer to the 11%.

Everything I've been told and have read indicates this is incorrect. It's less than 1% that are HPV-negative-caused cervical cancers - and they are rare cancers.

About 99.7% of cervical cancer cases are caused by persistent genital high-risk human papillomavirus (HPV) infection.

Human Papillomavirus and Cervical Cancer - PMC

Because the figures suggesting you to 11% are global,.not UK specific and they're very very outdated i.e. we now know that many of them classed as HPV negative cervical cancers were not cervical cancers or more sensitive testing found a HPV cause. The latest data for the UK is it's less than 1% are non HPV related and are very rare and usually have others causes or risk factors.