HPV status after diagnosis and treatment

Hello Jenna

Please don't worry - about 80% of the population has or had the virus according to statistics.  In some people it never causes any harm, in others they go on to develop cervical cancer or abnormal cells and others anal cancer.  I had both, not cancer but a conical biopsy many years ago when a smear test showed I had CIN III in situ, no treatment or checks for many years except standard smears and then anal cancer.  My husband hasn't been affected at all, that we know of.  The virus (I believe) only shows up when active.  It isn't something that we felt the need to talk about, I may have had it or he may have given it to me, but it doesn't worry either of us.

Keep a very open mind, you will be checked regularly for the next five years.  And your treating team may be open to giving you the vaccine https://www.analcancerfoundation.org/what-is-anal-cancer/hpv-vaccine/ but I am not medically qualified so don't count on that!  Another forum member was told by her oncologist that following treatment for anal cancer and being clear for three years the chances of it developing again were the same as the oncologist's.

You are not alone in your worries - not alway about the same issues but the memory of the absolute shock of that cancer diagnosis certainly lives on.

Big hug, Jenna

Irene xx

Thank you, Irene... I'm not sure I can lay this fear to rest, but maybe in time I will. A nurse here told me that adults who have been sexually active aren't eligible for the vaccine :( but a friend in the US told me she has been offered it. So much conflicting information, it's a minefield!

Jenna xx

Hi Jenna JenW 

As you can maybe imagine, this topic comes up often in the cervical cancer group and often causes a lot of concern and worry for the future.

Irene is quite right here-most of the population of the world who has ever been sexually active will come across the virus as it’s carried by so many people. For the vast majority it will never cause any problems, but for some of us, me included, it causes cancer to develop in some men and women.

It’ important to note that there are 200 or more strains of hpv, and most are not responsible for cancer-they are low risk and may cause things like genital warts. The hpv vaccine does not cover all strains but is designed to protect against the most high risk ones, and is normally given up to the age of 25 so the programme now in schools where both boys and girls can be vaccinated should go a long way to helping reduce the infection in the population.

No vaccine is perfectly reliable and failsafe, but it is possible to pay for the course of vaccinations required if you haven’t had them as a youngster. In some respects that can be a bit like bolting the stable door after the horse has bolted, but it can protect against strains you don’t already carry. (You can be a carrier of more than one strain).

Ultimately, once you have the virus, there is no cure-only treatment for the damage it causes with abnormal cells or cancer, so I do see a lot of people worrying about their post cancer future and thinking they may not be able to have future relationships.

I’ve been married to the same person since long before my cancer diagnosis so we’ve had many discussions about this and live our lives with the assumption that we both carry the virus. However, it’s not something that we give any thought to, or worry about because it just doesn’t matter to us. 

The virus can be inactive/dormant and not causing any damage and while you could pass the virus to a new partner, that doesn’t mean they would automatically ever develop any kind of cancer. They are likely to have encountered in their lives before, and more often than not have never known they carry it.

I would honestly encourage you to live your life without this fear hanging over you as it’s worrying about something that may never happen. This virus did the worst it could to me, and has done to you, but you deserve to get through your treatment and live life to the fullest as we all do! 

Sarah xx

Thank you, Sarah... I think if I had a long term partner, perhaps I'd not be concerned about it so much, but the thought of potentially meeting someone new just fills me with a sickly unease. I really hope I can move past this. 

I have my oncologist review this afternoon. I think it's all just playing on my mind more than usual. I don't usually dwell on the what ifs, but I guess sometimes you just can't help going down the rabbit hole! 

Jenna xx

I hope all goes well with your appointment today Jenna-I think when it’s time for scans or any kind of check up or review we are much more sensitive to thoughts about our cancer and it can be very hard to push those “what if” thoughts away.

Some people are by nature more anxious than others, but over the last 7 years since the word cancer came into my life I’ve tried very hard not to use the words what if. I do understand that contemplating a new relationship might be difficult for you, and it’s your decision to tell a future partner your history or not. I’ve encountered people over the years who have decided to live a life of complete celibacy and never be intimate with anyone again but what a joyless life that would be!

Going through cancer can give you a whole new outlook on life and an appreciation of what you have, so I hope you can push this worry way to the back of your mind and don’t let it have space in your head.

Sarah xx

Hi Jenna (JenW ),

You've had a couple of really good replies from both Irene & Sarah, I agree wholeheartedly with what both of the ladies have said & will reiterate that most people that have been sexually active in their lifetime will have already been in contact with one or another strain of HPV. Regarding the HPV vaccine I think the only way you’d possibly get it here in the UK would be to pay privately for it, I’ve heard that it’s most effective when given before you’re sexually active but I too have heard of people being offered it in the US so maybe it would be worth having a conversation with your Dr’s about it. 

I’m single & can’t say your concerns didn’t cross my mind when I was diagnosed & learned more about anal cancer & its causes, I’m still unaware as to whether my particular case was HPV related or not so decided I would no longer let that concern take up headspace. I must admit I’m very happily single at present & enjoy spending time with friends & family (& a bit of quality me time!) but I’d never say never. 

I hope your oncology review went well this afternoon. 

Nicola 

Hi Jenna

Like Irene I was diagnosed and treated twice for abnormal cells in my cervix, clear smears, then anal cancer 28 years later.

My partner of 38 years has not developed any problems related to the virus.

If a large percentage of the population carry strains of the virus, but anal cancer is rare, I am concluding we are just very unlucky.

Can totally understand your concerns, but hope you can find a way forward that makes you feel comfortable with future partners.

Ally xxx

Hey Nikki... thanks for your reply x I've not actually been sexually active for a couple years now, since I started having symptoms. I think in part, because of the embarrassment, maybe partly my age and peri menopause... but I now just have this adverse feeling towards even the most simple forms of intimacy I'm not even sure I want to pursue that kind of relationship again! But my choice feels somewhat taken away at this point. Like you, I'm way more interested in my relationships with my adult children and grandchildren and just enjoying my own company, but I just wonder, what if I met someone? 

The oncologist appointment was a bit 'nothing' really. I wasn't expecting any answers so soon, but it feels like the big wait is now fully on... will be beginning of October for the 3 month scan

Jenna xx

Hey Ally.... I do agree, we are just unlucky in this lottery of life when it comes to this! But I would feel far better about moving on with an intimate life if I still had a longterm partner by my side. Unfortunately, my marriage broke down around 15 years ago and I've not found anything with that kind of longevity since. So 'relative strangers' just feel so alien to me now. I think it would take a lot for me to trust in biology after this... the stakes just feel very high! And I'm annoyed at myself for thinking that way xx

Hi Jenna

Like others have said the majority of the population who have had sex are infected with at least one strain of hpv, for most it lies dormant and does nothing for some it flares up and still does nothing and for the unlucky few it causes problems. I can't say your worries even crossed my mind but I am concentrating on keeping my immune system, gut health etc as good as I can to hopefully keep the bugger dormant. Try not to let it take up headspace. Its early days and when you are ready and meet the right person I'm sure you will feel differently. Sending hugs. Xx