New Diagnosis + age factor

Hi there MissE  & welcome to our little corner of the MacMillan Online Community although I’m really sorry to hear what you’re going through right now. Here in the UK we complain about our NHS system sometimes but on so many occasions I’ve been thankful that we don’t have to navigate the health insurance system as you do, it must be a nightmare for you on top of the health crisis you’re dealing with right now. 

Regarding treatment for anal cancer should you get a diagnosis then chemoradiotherapy is the standard treatment unless there are any additional health concerns that could mean there are issues. The strength of the radiotherapy depends upon the staging of the disease & as far as I’m aware age has no baring on this. 

There’s some really bizarre information out on the internet regarding all kinds of health concerns, so much of the information about anal cancer is outdated at best & plain incorrect at worst, it’s right that a large portion of anal cancers are HPV related but anyone that has been sexually active in their lifetime will have come into contact with HPV at sometime or another, it’s how your body deals with it that makes the difference as to whether it goes on to cause a problem, as you’re already aware it’s a particular couple of strains that can go on to cause anal cancer. I asked my colorectal surgeon at my discharge appointment if my particular diagnosis was HPV related as nobody had ever offered me that information, his reply was that they don’t routinely test biopsies etc., for HPV as it makes no difference to treatment plans moving forward, so I guess I’ll never know. 

I really hope you find a good Dr really soon that will accept your medical insurance so that you have an accurate diagnosis & can move forward. We’re here to support you however we can.

Nicola 

Hi Irene ,Julie ….

i was told 99% of anal cancer was the hpv virus that men carry but woman can have .. most hpv is harmless but some can lead to throat , cervical or anal cancer 

Chrissie xx

Hi Chrissie49 

The body’s own immune system normally suppresses the virus, but in cases where it doesn’t, it can cause issues to develop as you you’ve said. Any man or woman that has ever been sexually active can carry the virus as it is caused by genital contact of any sort, and definitely not just anal sex for women.

As my cancer was cervical, finding out the correct information has been important for me in terms of understanding but ultimately it doesn’t affect the treatment we have since doctors in my own experience don’t focus on it-the main priority is treating the cancer. 

Sarah xx

Hi Sarah , 

you are right .. we are told what it is , where it originates but focus is on getting rid .. I would love to know more about how long it takes to get to cancer ? 
take care 

Chrissie xx 

Hi Chrissie

No-one would be able to give you a definitive answer on that, not even the medical professionals. Usually the information is that it takes a long time for the virus to cause the changes in cells which can mean cancer developing, hence we have cervical screening for the virus to check for its presence and then check cells for any abnormalities. 

However, with cervical screening not being a diagnostic test for cervical cancer it’s not a foolproof answer and I have had friends with clear smears be diagnosed with stage 2 cancer within 6 months.  I went straight to a cancer diagnosis myself, but was overdue with my smear test so it maybe could have been picked up earlier, although the type of cancer I had can often be missed on smears as it starts higher up in the cervical canal. I tend not to think about hpv now although I did when I was first diagnosed. Nothing I can do about it and there is no cure, so I was just unlucky in that I developed cancer. 

Sarah xx

Suz, you have put a sad face - do you think we should have been told? x

Hi Irene,

YES, I think HPV should be part of the conversation! I guess the cancer team isn't interested since it doesn't do anything to the treatment plan, but now I'm wondering if it's still active in me, have I given it to my husband, what if I die- can HE safely have sex with anyone else (I'm sure I can't and don't want to anyway) and so forth. 

I've got an appointment coming up with a new primary care doctor, am hoping I can have a frank conversation with her about it.

Keep us posted on the outcome Suz. I also wondered about that. As you can pass it on and I did have a smear recently and they said I do not have HPV but is that only the cervix or can you have it not there but can in the anus.  Has it passed onto your husband and can it get passed back? When the research says almost all those who have had sex have had it at some point of their lives but the bodies immune system gets rid of it but sometimes for whatever reason, menopause is one, our immune system drops and two strains of the virus cause cancer.

Julie

Hi Julie

If you have had the hpv virus in the past at all (as most people who have ever been sexually active do) it is in your system forever but it can be either active or dormant (suppressed by your immune system). I’ve seen different views on whether it can be passed back and fore between yourself and your husband, but as there is no testing done for men, you would never know. 

When you have the smear test and it doesn’t show hpv, the cervical cells aren’t tested further. But the test itself is only looking at the cervix, no other parts of the body. There are actually about a dozen strains of hpv which are high risk strains, but 16 and 18 are the cause of most hpv related cancers. There are more than 150 strains of hpv which exist, but the low risk types(for example the ones which cause genital warts etc) are not an issue. Smear tests are only looking for high risk hpv. 

Sarah xx

Thank you so much for that Sarah. It was very informative and from what I basically understand it’s saying there is not really a lot you can do about it anyway. I vaguely recall saying to my oncologist about if it was HPV would I have given it to my husband and would he give it back to me! She wasn’t really forthcoming with an answer so from reading yours I suppose if it lays dormant and there is no cure for us as we can’t have the vaccine we just take our chances and hopefully we don’t have to cope with those two deadly strains. I think the best way forward is try and be as healthy as we can be for a good immune system. Take care

Julie