Safe sex after anal cancer treatment

Hi Chrissie

I spoke to my consultant about this at the beginning of my journey. He said they used to think your body cleared the virus in a couple of years of getting it, but they now think as there is no way to test for it unless its active that once you have it you have it for good and in most people it will just stay dormant in your body and not cause problems and if it does become active it can not cause problems and go dormant again. He said they aren't 100% sure why it becomes active in some people and not others and why when active causes problems for some and not others but stress or being run down etc could be why it becomes active, which i think was the case for me as looking back i had had about 4 years of stress inducing life situations which i hadn't realised had affected me. He said the best thing to do is try to be as healthy as possible to keep it dormant. Obviously practicing safe sex will stop you passing it on or contracting another strain, but he said the majority of people who have had sex will be infected unless you have only had sex with one person and that person has only ever had sex with you. Hope this makes sense I think I've waffled a bit. Xx

Thanks bungle for that answer , I didn’t really understand what my colorectal surgeon said when they first found the cancer .. I have been with my partner 3 plus years and he is anxious to know more about the virus .. it’s true about stress as the past 5 years have been difficult for me but I assumed once the cancer went , so did the virus but then we are monitored for 5 years in case it comes back … could we then be reinfected ? It’s a weird one as no test like the smears !!! 
Hope all good with you? 

take care 

Chrissie xx

Hi Chrissie

The virus could become active again or it may not and even if it does it may not cause you any problems. It's a weird thing I obviously had active hpv in the bum which caused my anal cancer but part of my tests etc was a smear and that was negative for hpv as it wasn't active there. I'm not a doctor but from what my consultant said the best thing you and your partner can do is be healthy as you can, eat right, exercise, enough sleep, don't drink or smoke and try to have as stress free life as possible which will all help keep your immune system strong. This is what I'm trying to do, I definitely won't be perfect but will do the best I can with the things I can control. Most importantly don't stress about it. Xx

Hi Chrissie49 ,

I’ve no medical training of any kind & have never been told that my anal cancer was HPV related despite asking a couple of times, the last time I asked I was told my particular treating hospital don’t test biopsies etc., for HPV as it makes no difference to treatment/outcomes etc.

Having said this I’ve my own theory on the whole HPV connection to anal cancer. As we now know anyone that has been sexually active during their lifetime regardless of having 2 or 202 partners is highly likely to have been exposed to HPV, if you gauge the ages of the majority of us women here we have been diagnosed during or post menopause. In peri-menopause, menopause & post menopause our immune systems deplete naturally & with HPV it’s our immune system that deals with this as with any other virus we come into contact with therefore with a less efficient immune system any virus is likely to have a more detrimental effect on our health, HPV is no different. Myself I’ve always had regular smear tests since my 20’s & to date & have never had one where I’ve been recalled for any reason, I also had a normal smear prior to starting my treatment & another normal test since my treatment finished. 

I worked pretty hard on improving my gut health post diagnosis as a healthy gut means a more efficient immune system but as we do I fell off the wagon (pretty spectacularly) so this is my aim in 2025, to regain the best control I’m able to on my health starting with working again on my gut health! 

As I’ve said this is only my thoughts & I may be well off the mark but as Bungle1 has said stress & being run down can also contribute & these also affect our immune systems this is why we often pick everything up that’s doing the rounds if we’re run down. I’d also been through a few pretty stressful months prior to my diagnosis. 

Nicola 

Hi Bungle , 

thank you so much for sharing your thoughts .. I totally agree that stress must play a big part in our health .. I have always exercised , eaten well etc but stressed over things I can’t control like this hpv virus , which ironically could be triggered by the original stressful situation !!! ? 
There are so many questions surrounding this cancer and this forum is amazing .. 

take care 

Chrissie xx

Hi Nicola , 

hope you ok ? 

I couldn’t agree more with what you and bungle have said .. stress is everywhere in our lives and the body absorbs it .. it makes sense that the hpv virus is dormant and then triggered by our immune system .. 

Thank you 

take care 

Chrissie xx

Hi Chrissie49 

I do know that my cervical cancer was hpv driven, so I’m coming from that perspective. You’ve had great replies from Nikki65 and Bungle1 .

The virus has 2 states, active and dormant, and is only picked up when it is active-that would give you a positive test on cervical screening, which as far as I am aware is the only way of testing for hpv-there is no blood test for example.

As there is no cure or treatment for hpv itself, only the damage it causes to cells, it is something that will remain in your system and the hope is that by trying to take care of your immune system, it stays dormant and doesn’t do any damage. 

I am in the situation that I cannot have a smear test because I have no vagina, or anything else in there as it was all removed in my surgery, but to be honest I don’t give hpv a second thought these days. My surgery successfully removed my cancer but not the virus, and I know that it is so prevalent, whether we have slept with 1 person or 500, it’s not any “fault” of ours that we carry it. 

Not everything is known about the virus, and there is still plenty questions and debate around things like safe sex and re infection. Personally, as I know there is no cure, the issue of re infection is not something I am on board with, but that’s only my opinion. The issue of being dormant or active is more important to me. I do believe stress is a big factor too, based on my personal experience.

Sarah xx

Hi Sarah , 

many thanks for your reply .
I feel very ignorant about the virus that has caused my cancer and the lack of info from the medical profession … from the kind replies , this virus has been dormant , probably a while … negative smear tests have led to a false sense of security , so an anal cancer diagnosis came as a shock !!!! … 

I am trying to process the future with this virus and reassure my partner at the same time .

you take care and have a peaceful Xmas 

Chrissie xx

Hi Chrissie49 

I don’t imagine many of us really knew much or anything about the virus unless we maybe had a positive cervical screening. In my experience, the medics don’t really say much about the virus, and in the case of gps they probably don’t actually know much. 

I have spoken about it often with my partner who is completely unfazed by it and assumes they also carry it. After all, the majority of sexually active people do. Has it affected our relationship? Absolutely not. There is no test routinely performed for men, so men typically would never know they had it. 

I can’t have any test for the virus either now, so I’ve just accepted that’s how it is. Better to be rid of my cancer, and I’ve already had the worst possible damage this virus could ever do to me, so it’s not on my radar now. If my cancer recurs for a third time, I’d just have to deal with that-not fret about the “why”.

I hope future for yourself and your partner can be a very good and healthy one, not filled with worry about a virus none of us have control over. 

Have a lovely Christmas together.

Sarah xx

Hey Chrissie49 

So at 27 I had pre-cancerous cells removed from my cervix and HPV was present. I hadn't given it any thought whatsoever until this diagnosis.... and then I was a bit saddened by the lack of understanding that HPV (not all strains) can lead to six cancers - would have been nice to be monitored but I think there's still such limited understanding.

I'm not sure if any is taking our individual information and utilising the data to help gain a better understanding?  

My immune system was floored with glandular fever when I was 21 and this is also when I had my first sexual experience...  Is that relevant?  I have so many unanswered questions.  I do hope the more we can all share the better aware we can all become.  I did posts on LinkedIn/Facebook and Insta when I got diagnosed...  And so glad to have found this community as it really is (thankfully) a rare cancer. 

Anyway waffling on - hopefully others can share insights on HPV and reoccurrence.  It's a great question!