Pooling knowledge about HPV

  • 3 replies
  • 6 subscribers
  • 549 views

Dear all,

I am writing to see if anyone would find it helpful to pool knowledge about HPV related cancers.  I have persistent HPV and have been treated for CIN2 and as of today learnt that I have AIN2.  Very fortunate to have had both picked up and be in the system but whenever I have asked questions like "Why is my HPV persistent?" or "is there an elevated risk of other HPV related cancers eg oral?" the individual dr has no idea as they are a specialist in their field but not HPV generally.

I'd like to know if there is anything proactive I can do about my HPV status.  I eat well, don't smoke or drink much but have had this since my 20s I think and am now 40.  It's great to be in the system but also unsettling having unanswered questions and I'd hugely welcome an opportunity to pool advice between anyone in the same boat.  Some of the advice I have had has felt conflicting, eg my anal specialist who is fab, told me HPV is like glitter and gets everywhere so not to worry too much about how I got the anal infection whereas the equally fab gynae said oral infection was really unlikely.  One thing I did get from the oral specialist I paid privately to see to ask about all this (on a bit of a mission) was that if I did have an oral HPV infection the chances of it escalating to cancer were less than 1 in a 100 so the only action needed was keeping on seeing the dentist which was helpful. 

I just wonder if anyone else with HPV related diagnoses has felt the same need for more information and if we could help each other maybe?

Thanks so much,

MrsC82

  • Hi 

    I have an hpv related cancer, and have learned a fair bit about hpv in the past few years although I don’t have personal knowledge of oral hpv driven cancer.

    Interested so see if you get any further responses to your questions and happy to share the knowledge I have gleaned along the way.

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks so much for replying! I have read your profile and can see how much you have been through: you’re so generous to share your story.

    I have been referred to Homerton ano-genital clinic for monitoring of the AIN2 and hoping there might be some more informed people there. I am also on a group on Jo’s Trust where we have shared some of the helpful and less helpful things we’ve been told. For me the least helpful is always “everyone has HPV” It minimises things as not everyone has persistent high risk HPV and almost makes it feel like you’re being silly to worry or, worse, something is wrong with you if you’ve not shifted it.

    I’d be so interested to hear if you have had any helpful information about HPV in general,

    thank you so much

    mrsC

  • I do read Jo’s, although as a cancer patient I obviously don’t focus on hpv related discussions as they’re not relevant to me now. I’ve also read a lot over the years on there that is simply not correct but is allowed to stand, like people saying a hysterectomy will cure it forever and you don’t need further testing after a hysterectomy. This is not correct. 

    Personally, I didn’t spend any time worrying about hpv, as I went straight to a cancer diagnosis so it had already done the damage to me and I needed to focus on the cancer, not the cause. 

    It’s true that not everyone has persistent high risk hpv, but equally true that for the vast majority of people it will not cause any issues, ever. Those for whom it does have been unlucky and are the minority in the grand scheme of things.

    There is no cure for hpv. Once you have it, it’s there in your system, and can be active or dormant, depending on the capacity of your immune system to suppress it. When it’s active, it can cause damage in the form of abnormal cells. When it’s not active it can’t be detected in a test. A negative hpv test does not mean you don’t have hpv, if you have previously tested positive for it. 

    You will read a lot about miracle “cures” and it’s a personal choice to try green tea and mushrooms etc. People will claim success on various remedies and say they are now “hpv free”. In reality the virus is dormant when they are tested, so at that point will not show as positive on a test. It could show as positive at a later date if it is reactivated. A negative test does not equate to a cure, but there’s a lot of money to be made by companies promoting such things.

    Keeping your immune system as strong and healthy as possible is in my opinion the best chance of suppressing the virus.

    Obviously I’m not a medical professional but I have been around many cancer and hpv related groups over the years, read a great deal about peoples’ experiences, and seen the evidence of people relying on natural remedies to cure themselves while foregoing any kind of medical intervention when treatment is recommended. 

    I believe that all we can do is keep up with monitoring and have appropriate treatment when recommended, 

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm