Concerned that smears only test for HPV

Hi all, newbie here! So I was diagnosed stage 1a back in 2017. I had the LLETZ procedure which thankfully cleared it all and no further treatment was required. However, back in 2017 they were not testing for HPV so i have no clue whether or not my diagnosis was as a result of HPV. If it wasnt, as not all cases are down to HPV, my concern is that smear tests only look for HPV initially, rather than abnormal cell changes. How are they picking up non HPV related cervical cancer if they arent testing for abnormal cells?? Really concerns me, anyone else? Thanks for reading and sending everyone love :heart:

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I’m afraid I don’t know the answer to that but I’m interested to know if somebody does. Smears are tested for cell changes if HPV positive according to the NHS website but not if HPV negative. HPV-independant changes are statistically much rarer than HPV related changes and the new HPV test is as successful at indicating CIN as the old pap smear. My diagnosis is HPV-independant CGIN, though, and I only happened to be sent for colposcopy because of repeated HPV positive results (no changes found at smear). I’d love to know if anyone knows whether it would ever have been picked up before I developed symptoms without also being HPV positive. Wouldn’t it be ironic if HPV actually helped keep some people healthy by prompting colposcopy!?

Hi @Jwalton

Unfortunately smears arnt of any help when it comes to the none HPV CC cases, they discovered HPV to be the cause of 99.7% of CC cases and the direct cause of our precancerous changes/stages, these can be picked up by our smears but the 0.3% there doesnt seem to be any precancerous stages to help prevent it, as women who got regular smears (going off those before the HPV testing was a primary that is) there isnt any warning signs of those types like the HPV CC does

The 0.3% are so rare there isnt much data on them, they really dont know what causes them (apart from clear cell CC thats common in people whos mother took diethylstilbestrol (DES) when they were in utero but nobody takes that now when pregnant those woman are screened seperately) most oncologists can go their whole careers without coming across a none HPV CC case xx

Hi @Knitty

Smears can and do sometimes miss CGIN depending where its located as it can happen anywhere within the cervical canal which is quite long lol if it wasnt for the HPV testing its very likely they wouldnt have found it without the further investiagtions before it progressed to something worse… smears can only scrape cells from where they can visualise so the surface of the cervix and the opening… if the CGIN is hiding further up where they cant reach it those cells will go unnoticed xx

Hi
You’re quite correct that since 2018 the first test is for HPV and only if positive do they then look for abnormal cells.
My story … 2014 smear negative … 2018 smear negative for first test of HPV so not checked for abnormal cells. Unfortunately last year I was diagnosed with the none HPV cervical cancer stage 2b. When they told me I did not believe it as my smears always negative. A review of my past smears were done and turns out the abnormal cells were present on the 2014 slide but not picked up and by 2018 they were not checked for abnormal cells as the testing had changed to HPV test and only if positive then they would have looked for abnormal cells. I was by 2018 post menapause and attended the doctors with symptoms which were put down as menapause ( now know different ) only last may I had a post menapause bleed and was referred under the 2week pathway. By this time the tumour was visible. …. I now just wish that they still tested for abnormal cells as well as HPV…. At the very least instead of the media and NHS along with charities advertising ‘ go for smear it will eradicate cervical cancer ‘ it would be better to add that some cancers cannot be picked up on smears and women should visit the doctor with any symptoms. Also doctors need educating too as mine stated oh your last smear was normal so that can rule out cervical cancer… it has to be all down to education now.

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Its like since they found out nearly all CC is caused by HPV the small minority that isnt have been forgot about, 0.3% against the population is still a big number in my eyes… its not just normal smears, they dont even test the cells on a test of cure smear after treatment if its virus negative, its like false negatuves dont exist in their eyes… i dont know why the NHS do it like this, everything ive read about HPV co testing smears cells are still supposed to be checked… otherwise we arnt actually getting a smear were just getting a HPV test

There definitely needs to be more widespread info about all things CC, i was quite ignorant about it thinking i had no risk as i was vaccinated (not knowing what i know now that is) i only went to humour my mother who also had abnormalities, before the HPV testing, and then i had a wake my up call so i try to tell anybody i can lol xx

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I also try to tell everyone I can about HPV negative cervical cancer When I was diagnosed a friend said to me oh no why didn’t you go for your smear😥 I now think everyone who I tell I have had cervical cancer thinks in their minds that it’s my fault for not having my smear. The media do nothing to contradict this which is very disappointing. I really feel like writing to the BBC or ITV to have it broadcast about HPV negative and ladies should not think they are clear because of the HPV test has come back negative. I am just about getting my head around the fact it isn’t my fault. Which is really sad. I do with Jos trust would run a campaign with this information included to educate woman who think they are safe

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Hi

Like any test HPV primary screening isn’t perfect but it seems there is good evidence that it’s considerably better than the previous cytology (cell) screening.

According to a study, published in the BMJ in 2019: ‘In England, routine primary hrHPV screening increased the detection of cervical intraepithelial neoplasia grade 3 or worse and cervical cancer by approximately 40% and 30%, respectively, compared with liquid based cytology’

REF: https://www.bmj.com/content/364/bmj.l240

x

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It’s a really tricky one and one I assume the NHS and cancer charities have probably debated. As far as I understand it, most HPV-independant cervical changes are CGIN which is also tricky to pick up with a conventional smear. And it’s still a very small percentage of all changes. All the literature suggests that incidence of HPV-related cervical cancer (and precancers) will decrease over time due to the HPV-vaccine rollout (in the UK at least) so that the proportion of HPV-independant cervical cancers will rise. I suppose the problem is you don’t want people to think smears/HPV testing don’t work (they really do in the vast majority of cases) - you just want them to keep an eye on any symptoms too.x

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Thanks for that info @Jazza that’s really reassuring!x

Apologies for resurrecting this old thread but I just wanted to know if anyone has an insight here. As mentioned upthread, I was diagnosed with HPV-independant (possibly gastric type) CGIN (adenocarcinoma in situ). They did a LLETZ and the results came back as clear margins. Over the moon as you can imagine! I’ve just re-read the ‘please come back in 6 months’ letter I received and it refers to an ‘HPV proof of cure’. I’m now a little concerned that a clear HPV test will be deemed a ‘proof of cure’ when it wasn’t HPV that caused the CGIN. Does anyone remember what test was done for HPV-independant CGIN? Thanks so much :slight_smile:

Hi @Knitty

They do use the same testing as someone who had squamous cells removed they use testing as a primary, but its the management is alot different

https://www.gov.uk/government/publications/cervical-screening-programme-and-colposcopy-management/3-colposcopic-diagnosis-treatment-and-follow-up

"Follow up of treated CGIN

Individuals who undergo excision for CGIN are at risk of recurrence. If the CGIN has been completely excised at the time of first excision or subsequent re-excision, a test of cure (TOC) sample should be taken 6 months after treatment. If negative for hrHPV a second TOC sample is taken 12 months later (18 months after treatment or the subsequent re-excision). If this is also negative for hrHPV the individual can be recalled for screening in 3 years. These samples can be performed in the community.

If at 6 or 18 months after treatment the test is positive for hrHPV the individual should be referred to colposcopy. A reflex cytology sample is processed to help inform colposcopy.

If an individual fails TOC at 6 months only because of a positive hrHPV test, cytology is negative or inadequate and no abnormality is detected at colposcopic examination, they should have a second TOC sample 12 months later. If this sample is hrHPV negative the individual can be discharged to recall in 3 years. Further recall will depend on the result of this test and the age of individual.

If a positive hrHPV test with abnormal cytology is reported in either of the 6 or 18 month TOC samples, the individual must be referred to colposcopy for management. If no colposcopic abnormality is present and re-excision is not appropriate, the individual should revert to 10 years of follow up with annual hrHPV testing."

All smears since 2019 even test of cures are completely HPV motivated, do you know where your test of cure is being held? If its your GP maybe have a word with them see if there is anythjng they can do like put a request in and note you still need your cells checked as HPV isnt the cause of your changes… if its at the colposcopy as sometimes they do this there depending on certain things they may be checking your cells there xx

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Thanks - does look as though the standard TOC will be the hrHPV test, then. It’s at the Colposcopy unit, so I’ll ask them when I’m there. Really appreciate you getting back to me - there seems so little information about HPV-independant CGIN around x

Just following this up as I had my TOC results back today. I brought up my concerns at the appointment and the Colposcopy ladies were brilliant and put my mind at rest. There was an extra smear because of the CGIN with a different shaped brush. Sadly, when I got my results back today they referred only to there being no evidence of hrHPV. Called up to make sure the cells were clear too (as my CGIN was HPV-independent). Apparently if there’s no risk of hrHPV, they don’t test the cells they took. When I tried to explain how worrying I found that, the head nurse said that all I could do was get my GP to write to the hospital for more details. I feel like I’ve lost all faith in the follow up. If the follow up of the HPV-independent CGIN (which has a higher recurrence rate than other forms of cell change) is HPV tests, it doesn’t matter how often they are, they aren’t going to catch any new cells, surely?

I was told very recently by a gynaecology consultant that a smear only tests for HPV, this keeps the cost down for the NHS. If HPV is found then they take it further, however if it’s negative then it goes no further. I’ve had HPV since around 2018, and it’s now caused VIN3 and I had surgery five weeks ago to remove affected skin from my vulva. As long as I still have HPV in my system then the VIN3 will probably keep coming back. I’ve been doing some research since then and have found that a herbal supplement called AHCC is thought to clear HPV so I’ve started taking it, fingers crossed!

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