New Diagnosis + age factor

Hi Julie

Often our own doctors are vague about hpv and come across as not being able to give straight answers, and often I suppose there isn’t a straight answer because they are still learning about it. 

I think the best thing to do as you say is maintain a healthy immune system to keep the virus suppressed and not doing any damage. I was reading some more about it in connection with men as my ex husband has just been diagnosed with early stage prostate cancer and I didn’t know if there might be any link.

He has no other risk factors himself for prostate cancer, but I have found in research that the virus can change the cells in the prostate and that’s the first I knew about it! We were together for nearly 25 years and I did assume we both had the virus, but was very saddened to read it that it could be both of us now who have been adversely affected by it. He is just under active surveillance for now and no treatment until his PSA count rises. Based on my own experience, I’m glad his has been caught early and should hopefully have a good outcome for him.

Sarah xx

Thanks, Sarah, it's more or less what my gastroenterologist said, but her version was more vague and open-ended.

I didn't realize there was no testing for men!

:O Suz

Hi Suz- there is no routine hpv testing for men here, but don’t know if it’s different in the States or if makes a difference if you are man having anal sex with a male partner.

It seems like the risks for a man of developing an hpv related cancer are much less than for a women according to research in the UK. 

Sarah xx

Isn't it strange? I'd have thought older women would be the least likely to get this, but we seem to be the main target.

I’d think that may be because of the length of time an older woman has been sexually active and the fact that hpv is typically picked up in the early years after becoming active. Then once we have it, it’s there in our system potentially for a long time. Only within the past few years in the UK has screening involved a check for hpv as the first step, and if it’s active at the time of the test, it shows up. 

Sarah xx

Sarah, so if those sexually active have very high risks of contracting it and some of us go through life not knowing we have it, can your body naturally rid itself of this virus usually within two years? Can your body cure itself or as you say can just stay dormant. I’m presuming the two cancer forming ones are unable to be eliminated. So if we had had treatment and NED we can still have the dormant devils still lurking within. I did read somewhere although they don’t give the HPV vaccine once you have had it, they do give vaccine to gay men with HIV and the HPV virus due to high risk of cancer in the States. I just cannot find the article but did wonder that if they think it’s effective in this case then why not give it to others. Sorry I am asking you all these questions but you seem far more knowledgeable in this field than me. One minute you read your body can rid itself and then it’s not curable!

Julie

Hi Julie , 

the hpv virus normally leaves your body within 2 years but for some of us it doesn’t .. not sure if it is an age thing or our immune system ? 
Chrissie xx

Hi Julie

Everyone who is sexually active, male or female, can contract the virus but I think it’s critical to remember that not all of the strains are high risk or cause real issues-we are the unlucky ones. We can carry more than one strain, and some might be low risk but here the NHS is looking for high risk strains only.

Lots of people can clear it by their immune system dealing with it, but clearing the virus is not the same as curing it, as a cure isn’t possible. It will still be there in your system, but dormant.

HPV can’t be eliminated, but if it is not active it will not show up on an screening test.

Taking myself as an example, my cancer is hpv driven, and although I’ve actually not discussed hpv with my doctors, my adenocarcinoma is caused by hpv and that is the reality of it. 

I was NED after chemoradiation, but the virus would still have been in my system. I didn’t have a cervical screening test at any time after my treatment as I was told that testing isn’t reliable after radiotherapy. My cancer returned after 9 months (probably I still had some cancer cells left after treatment which couldn’t be seen in a scan). 

Then I had surgery when I had my pelvic exenteration, and was NED again, and now I cannot have cervical screening as my vagina and whole reproductive system was removed so there is nowhere to get the test from! 

As for the vaccine, we don’t get it as older women who have had cancer, but there is some research you can read which may indicate that having the vaccine after the event as it were, can kickstart the immune system into clearing the virus. I have read it is available to gay men in the UK. Women can pay for it if they are past the age cut off point but it’s just not available on the NHS for us. 

For whatever reason, our bodies weren't able to clear the virus-it can be harder to clear it as we get older, it can for example show up again around the time of menopause or at any time when our immune system is lowered. 

It impossible for me to have another hpv test ever again, so I will never know if it is active or dormant within my system but I know that it is still there however. I have to just hope I don’t develop cancer again because of it! Hope I’ve explained myself quite clearly here but feel free to question me if I haven’t.

Sarah xx

A very informative post Sarah , thank you 

Chrissie xx

Suz, I must admit that none of that had occurred to me.  But I am not sure that if at diagnosis the oncologist had gone into more details if I would have been receptive, hearing I had cancer was bad enough without the (totally unwarranted) stigma that accompanies anal cancer.  But it is strange that I am being treated at a world-renowned cancer hospital and no-one has ever mentioned it.

I am interested to hear how your appointment goes.

Irene x