Well I had a reminder to go for my cervical smear test last week, first one since completing treatment, so I thought I’d make a telephone appointment with the nurse prior to going for the actual appointment just to give her a little background on my situation before turning up. What a lovely understanding lady! I explained about my diagnosis & subsequent treatment & the issues this treatment leaves behind, stenosis, fragile skin & so on & the fact that I’ve never managed to find out if my particular diagnosis was HPV related, she double checked through my smear history & said there was definitely no history of HPV ever being picked up on any previous screening. I’m going to have to put a call in to my surgeon to see if he can take a look at my notes to see if there’s any mention of HPV being the cause of my cancer. She has also said she’ll book a slightly longer appointment for me in case I feel the need to stop during the examination & has said she’ll start with the smallest available speculum so that it’s not too uncomfortable. I also voiced my concerns about the possible change to cells because of the radiotherapy giving a false result but she said she would put all the details on the form that’s filled in to go away with the sample so that the lab technicians would be aware of my history. Anyhoo my appointment isn’t until 12th April so still over a month away but will update once it’s done.
Nicola
Hi Nikki65 Nicola
It would depend on when your last smear test was as to whether hpv was checked for as it’s only in the last few years this has been the first check done. Previously, the test was for abnormal cells first and if none were identified then hpv wasn’t tested for. Now, the first check is to see if there is active hpv, and if there is then they will look for abnormal cells.
With my own cancer, there were no more smear tests following treatment due to the pelvic radiotherapy typically providing an abnormal cell result and the consultant relied on visual check ups. Now of course after my surgery there will never need to be another smear test! It’s very good that your treatment will be noted for the lab techs as the results will need to be carefully read in light of your treatment.
Glad to read you had such an understanding nurse too, so that they will take extra care with you. Good luck with it and hope it goes smoothly for you.
Sarah xx
Hi Sarah SarahH21 , I had received a reminder for my last smear test in 2018 literally the week before my diagnosis, obviously the whole cancer diagnosis thing took over, following my MDT meeting it was decided that it was possible that my ‘cure’ could be achieved with a local resection & as soon as I saw my surgeon he asked when my last smear was, I said it was due so he advised I had it done prior to my surgery so it would have been screened for HPV. It came back as a normal result.
There’s a lot of conflicting advice out there over if we should go on to have any more smear tests following pelvic radiotherapy,
I've been incredibly lucky with everyone that’s been involved with me medically since my diagnosis, my oncologist & surgeon are wonderful caring doctors & yes the nurse today was very understanding & kind enough to explain everything & reassured me that everything would go at my pace.
Nicola
Thanks Jaycee12 , I’d intended on giving my surgeon a call before my appointment with the nurse so that I could tell her if my diagnosis was HPV related but life got in the way, had a couple of super busy weeks with one thing & another but I must call & see if there’s anything in my notes. I might just squeeze one more smear in after this one then that’ll be it for me also!
Nicola
Hi Nicola
You’re right about there being lots of conflicting advice out there-I’ve certainly seen this approached in different ways after pelvic radiotherapy. I didn’t question it at the time as I wasn’t very clued up at the time of my diagnosis or indeed just afterwards. So I basically just followed what my consultant told me.
I know for a fact that I have an hpv driven cancer, yet I’ve never once had it confirmed that I had hpv. But it’s very rare to have a cervical cancer not caused by hpv, and I don’t have a rare type of cervical cancer so therefore it was caused by hpv. I guess it’s all water under the bridge now, and in any case I’ll always have hpv in my system as there is no cure.
So your smear would have come back as negative for hpv at the time of your last test? It can be active or dormant so I can understand why you want to know more.
Sarah xx
Thanks GreenNanny , that would be ideal if it could be done at the same time while you’re under anaesthetic. I’ve always had normal results back from all of my smears & never had an issue with having them done but it was mentioned a couple of times that my cervix sits quite far back whatever that means! I’ll just be grateful if they can find it this time!! I’ve also still got a mirena coil in situ that needs removing so I’m going to ask if the strings are still visible, if so it might be possible to remove it normally but if not I may need to have it removed under anaesthetic, I wish now I’d had it removed prior to my treatment but my oncologist said it was fine to leave it where it was.
Nicola
Hi again Sarah, we put our trust in our Dr’s don’t we & follow their advice, I would have been the same had either my oncologist or surgeon had said not to have any more smears but the subject has never been discussed.
As far as I’m aware around 90% of anal cancers are HPV related so I presumed in the beginning that mine was too, it’s only as I’ve learned more about both that I’ve questioned whether mine is or not.
With being in a clinical trial for my treatment I had to sign over my biopsies etc., to the body that runs the trial but there is going to be s record of the biopsy results on my notes surely & I would have thought that with the high incidence of these cancers being HPV driven my biopsy would have been tested for HPV. I know once you’ve contracted HPV then it’s there for life either dormant or active, as you say there’s no cure, but yes I’d still like to know if I do have it for sure. I’m going to call my surgeon later today & start a little digging. Thanks for once again sharing your experience.
Nicola
Hi Nicola
As far as I’m aware, the only way to test for hpv in women is by taking cells from the cervix as it can’t be detected in blood or bodily fluids so I’ll be interested to hear if it can be tested for in any other way, for example from a biopsy. Even after all this time since my diagnosis in 2018 I’m still learning new things about this virus! It’s astonishing really that given the high rate of both of our cancers being caused by hpv there is not more discussion or explanations for us. I’ll be interested to hear how you get on with your investigations.
Sarah xx
Yes as far as I’m aware in the case of an anal cancer diagnosis biopsies can be tested for HPV & it will give a positive result if this has been the cause. I’ve definitely come across others that have told me they’ve had no other positive HPV results via smear tests etc., but have had a HPV positive anal cancer diagnosis.
This journey is a constant learning curve isn’t it? Since my eldest daughter was born & was quite sick when she was a baby I’ve always been an information is key kinda gal so I’m always up for asking a question or two!
Nicola
