Hello!
I have been told I have cervical cancer- however all my smears have always tested negative for HPV virus - even my last one in January 2018. I had a baby February 2019 so was pregnant since May 2018.
can I still have cervical cancer without the HPV virus? I don't smoke at all, don't have HIV or anything else.
im so confused x
hi Donna
Its true that the majority of cervical cancers are caused by certain strains of HPV, but not all. HPV 16 and 18 cause around 70% of cervical cancer. There are a few other strains which make up a further 25% of cases. So that still leaves 5 cases in every 100 where there won't be any detectable HPV infection.
We are all statistical anomalies, as it is a very rare cancer in the developed world.
Im sorry that you have had this diagnosis, but you're in the right place to get understanding and support x
Is it adenocarcinoma? They are not always HPV related. I had glassy cell adenocarcinoma which is very rare and not usually HPV related.
Karen
Hi Donna
Hope it's OK to ask but are you sure your smear was tested for HPV in 2018?; I think that HPV primary screening was mainly rolled out in the UK last year. I would have thought only the cells would have been checked in your 2018 smear and an HPV test done only if abnormal cells were found Or maybe the area you live in was one of the first for HPV primary testing?
x
Ive had 5 paptests done in 2 years because ive had alot of bleeding that only got worse. 4 of the paptests came back as pap1. The GYN thought i bled because of a fibroid, so kept sending me away. After two years ive had it and i demanded they just take my uterus out. Because i could not take the bleeding, blood clots and hemorrhaging anymore. They did another paptest which came back as pap2... they decided to try a LIS and then they found a tumor of 4cm. They did not test on HPV in 2018 and 2019, just started testing on HPV this year and my HPV was negative in juli 2020.
So if your question is if a paptest could miss the CC, then yes it can.
Yes I'm sure I've been tested for HPV as when I rang up my doctor the other day she was as shocked as I was and said I've never tested positive for HPV or had anything that looks concerning on smears. My husband listened in too so don't think we got it wrong but now I'm wondering- but I'm 99% sure she said I've never had positive HPV
I guess in a way we are just clutching at straws! Xx
Thank you for all your replies - it's a very confusing time and I guess when we google things (which I know isn't the best thing) we have questions and I guess it's just the hope it may be wrong hehe!
we are both (husband and I) just wanting the test results back now to know the stage and what we are dealing with- really wish the consultant didn't tell me her professional opinion that I had cervical cancer and just said that she is testing some of my cells - as it's been an awful week of not knowing xxx
I am so sorry. I know how you feel. Yes i had that hope too, that it might be nothing. I remember clear as day. Even my GYN said he was not sure if it was cancer or maybe just seeing the fibroid. But then i got the call and my anxiety went through the roof. A tip i can give you is too ask for some xanax. It helped me stay calm. The worst part actually is the waiting. Once you know whats up (wheter it be nothing (yay!) or it be something..) When you get your treatment plan you will calm down. Goodluck honey. Try to stay calm because stress is bad for you. Xxxx
I am HPV positive but my mom and sister both had precancer and mom's was in situ and neither had hpv. I think it is not as much a 'sure thing' as we are told. Just my experience. I am so sorry you are dealing with this.
Last year, PHE and the government rolled out a huge change to the cervical screening programme. They are now only testing women for cell changes, IF they first test positive for HPV. If HPV negative, women will be sent away for 3 years.
Had my test been this year, they would have missed my severe CGIN and stage 1b1 endocervical adenocarcinoma. Under the new guidelines, I would have been sent away for three years.
I was 24 and it was my first routine smear test, so it's worrying that other HPV negative women will not be tested for cell changes. I only discovered these changes a few weeks ago, when I was told it would now affect my follow up appointments. We are now campaigning for PHE and the government to consider HPV negative women, that will now not be as lucky as I was.
This started off as a petition but as I'm not hopeful of the governent response (if any) - I've decided I'm in this for the long haul, for this issue, under 25s with symptoms being refused early smear tests, and the similar scenarios for breast and bowel cancer screenings. Give me a shout if you want to get involved, need all the help I can get!
