What type of cancer do you tell people you have?

I started off calling it AC (I figured I'd stretch it out to Ass Cancer if there were iinquiries) but I gave that up pretty quickly and resigned myself to saying 'anal cancer'. Whether I follow it up with anything- a joke or a wry comment- is dependent on their reaction to it, and my mood.

My friend Cat was the best. She asked solicitously if it was breast cancer, and when I replied, did the usual shocked, OMG-how-will-I-react-to-this face, then bellowed, 'Oh HONEY!; and wrapped me in a bear hug.

Suz

Hi mll, when I was first diagnosed with anal cancer the first thing I wanted to know was why and what caused it. Therefore I started to Google Anal Cancer and the information is downright misleading. Almost to the point that they blame the person for supposedly having multiple partners (each to their own as it’s none of anyone’s business) and participating in anal sex due to the high risk for homosexual people and not wearing protection. Wow I thought does that mean it was caused by my sexual behaviour? NO! I have been in four relationships and two of them I married and when people started to ask me what cancer I had I knew some would Google it like me so I would be honest about it and say everyone of us who has had sex is at risk due to our immune systems and some just don’t clear out the deviant strain from the HPV. I was attending a group run by my local cancer charity and we all had to sit in a ring, about 20 of us and announce what we had. Over half was breast cancer which stirs sympathy, one was brain cancer and bowel cancer and accepted cancers and I was the only one with anal cancer. I said all of us have indulged in sex I’m presuming and some are just unfortunate and the hardest part is the information out there seems to send the message that it’s self inflicted which it is not. People need education as this cancer is unfortunately on the rise. The people who know me don’t judge but I don’t judge anyone who has this awful cancer for whatever reasons as it’s just a awful cancer made worse because of what they put out about it. I’m not ashamed to tell people as we need to say what we got and when they ask what caused that ( some with this false sympathy look) I say simply sex and ask them if they have had sex? At the American Anal Cancer Foundation I think I read very similar experiences of how information is put out and victim blaming is what they are trying to eradicate. At least we are rare I look at it with a funny kind of humour. I just look forward to the day when I am not having to expose my butt to all and sundry ha ha

Hi mll ,

When I was diagnosed & going through treatment only Family, half a dozen close friends & my manager at work knew that I had cancer & only my family knew specifically what kind. This wasn’t due to anything other than the way I felt I could cope with things, I deal with anything major better privately, I don’t do well with sympathetic looks etc., lol

As I learned more about anal cancer & recovered from treatment I began telling more people what I’d been through & when asked what kind of cancer I’d had (depending on the person asking of course) I would say I’d had anal cancer then follow it up by sharing the true facts (not the rubbish that pops up on Dr Google!) about how it’s caused by a couple of certain strains of HPV, the same virus that causes cervical cancers & some people’s immune systems are capable of clearing it but with others it’s responsible for a large portion of these cancers. 

If it’s someone asking that I think is just being nosey or have no real interest (there’s been a few lol) I just say it was bottom end & I’ll leave the rest to your imagination, that tends to stop them going any further! 

Education needs stepping up on our particular & other rarer cancers to dispel the untruths that are out there & to give people the facts so others know the symptoms to watch out for & aren’t embarrassed about visiting & challenging their GP’s, so this will inevitably lead to earlier diagnosis’ & better survival rates! 

Nicola 

Well mll, when I started off 28 months ago, I didn't even want people to know I had cancer, not even my own daughters.  This was in spite of the fact that as I had to have six months systemic chemo first that I would lose all my hair.  How daft was I?  I am a very private person and I can't quite analyse my feelings feelings back then, it was a mixture of not wanting to be pitied, talked about, to spare those close to me and probably a big dollop of denial.  Then of course the inevitable happened, I lost my hair, people did find out and were all extremely kind.  But I didn't use the 'A' word.  I told them I had bowel cancer.  Of course, my family all knew, but, gradually, with a few people I was close to I dropped in the 'anal' word.  Then on Sunday, at a do at my daughter's, I started talking to a young chap whose brother has just been diagnosed with bowel cancer and I just said that's not exactly like mine, and told him.  But he is in the minority.

I feel, and still feel, dismayed that I am perpetrating - sorry, perpetuating (autocorrect!) the myth that it is an unacceptable cancer to have.  I enjoyed my youth greatly and had a few sexual partners and I wouldn't change a thing.  I suppose part of it is not wanting to justify or quantify my illness - 'she doth protest too much'!  Anal cancer does come under the umbrella of 'colorectal cancer' but then under risk factors it talks about multiple partners and anal sex.

I would go with what you feel comfortable with, that is the most important thing.  Sorry if I haven't been helpful, but you certainly aren't alone in your feelings. 

Irene xx 

Hi Mll 

I know how you feel i had never heard of anal cancer till diagnosed and did tell my immediate family and friends. But when I started to read online about anal cancer i was shocked and sorry to say i couldn't tell anyone else and just say thought i had haemorrhoids but turns out it was cancer but don't say anal cancer just leave at that or say a lower bowel cancer. 

This is because if I'd googled what it was others would - i do wish it was portrayed differently online ....

Glad we have this lovely bunch on here who understand.

Best wishes

Carole x

Hi all according to the anal cancer foundation.org it has an article about people’s feelings when diagnosed with anal cancer and how it was one of the last cancer charities formed probably due to the nature of it. It is worth a read.

Your reaction was very similar to mine Irene75359 since my cervical cancer was caused by hpv. I did tell my daughters and a couple of friends the specific cancer, but didn’t tell others I even had cancer until after I’d finished chemoradiation. I never said what type of cancer even then. I shouldn’t have felt a sense of shame, but I did and I didn’t want to feel judged or pitied, or for people to consider this was my own fault. I didn’t lose my hair on my chemo so there was no obvious sign. Two friends disappointed me with their reactions-one because I felt she blamed me for bringing it on myself, and the other because she went straight to Google and starting quoting things from there which weren’t accurate-I actually cut her completely out of my life.

I get angry about the unnecessary stigma of hpv but yet I didn’t speak up to help dispel it. And almost 5 years since diagnosis I still can’t. So that angers me about myself! If people asked outright what cancer I had (a few did who were just being nosey) I said gynaecological and when people assumed it was breast cancer I just said it wasn’t and left it at that. 

I hardly told a soul when my cancer recurred and I had my exenteration surgery-not even my in-laws. Lockdown literally just started so I wasn’t seeing anyone anyway when I began my recovery. People might have assumed I was having a hysterectomy so I left it at that and kept quiet. I only speak freely within this community and in the private support group I set up. So I completely get how you felt. 

Sarah xx

Thank you for sharing. I feel so much like you do. 

Sarah, I realised that the less I knew people, the more they wanted to know which I found a bit strange.  Needless to say I didn't tell them.  We have always been very open about it in the immediate family but even my daughters tell friends colorectal cancer.  I know for an absolute fact that they don't judge me, they in turn don't want people judging me.  And so it goes on.

I always think how brave you are coping with this and raising awareness.

Irene xx

Oh, absolutely Irene! I had acquaintances asking me and I had no intention of telling them. I felt it was just being nosey so they could gossip, and maybe feel quite smug that it wasn’t them going through it. But I wanted to keep things to myself and tell only those I trusted fully. I felt that gave me a little bit of control when everything else was outside my control. 

The friend I cut off was someone I’d known for years, but I didn’t need anyone quoting Google nonsense. She was never in touch once in the first 4 months after my surgery, yet was posting like a rash on social media about her wonderful life. That’s when I called her shallow and realised she didn’t actually care. So I was very polite and simply told her I didn’t wish any further contact with her. I really did need her “friendship”. 

I always feel I should do more in raising awareness, and I’m not sure why I find it so difficult-still that bit of ridiculous shame that my cancer is directly associated with sex. I do beat myself up about still having those silly feelings! 

Sarah xx