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telling people you had anal cancer

pem
Posts: 62
Joined: Mar 2013

does anyone have any advice on how to change my thought process on being so embaressed for having this type of cancer.  i dont even go out with the fear of someone asking me what type i had.  i feel so alone, sad and borter line falling into a depression.  i only feel comfortable around my kids and husband.  i havent seen freinds or anyone outside my house since my treatment started jan 29/13. should i go see a specialist to help me?  im scared i wont be able to dig my way out of this hole im falling deeper and deeper into.               pem

LaCh
Posts: 536
Joined: Dec 2012

Most? I don't know. Maybe some. I don't feel shame. I can't be the only one.

jcruz
Posts: 280
Joined: Jan 2013

absolutely no shame here

pializ
Posts: 307
Joined: Nov 2012

Pem it is up to you what you tell or don't  tell people. I tend to vary my information sharing depending on how well I know the person. This is not to share my blushes, but theirs. I don't feel shame from having anal cancer. I'm too busy making the most of my life seeing as I have been given a second chance. My recent scan (I finished treatment 25th January)  indicates that the primary tumour and 1 of the 2 lymph nodes thought to be involved haveresponded to treatment. The other lymph node remains as it was on pre treatment scan in November. The node cannot be biopsied due to position, so it will for nowbe observed. So, shame is not on my list of to be/to do. My life is! Don't waste yours worrying about oothers opinions. They are not that important....... well in this instance anyway. Liz x

1linde's picture
1linde
Posts: 10
Joined: Apr 2013

Add me to the list that tells strangers and those on my outer circle I had colon cancer. My real friends I have told and I let them know it is because "they can handle it." 

 

Interestingly, even when I was going through radiation and other patients asked me what I was being treated for they seemed embarrassed to discussed anal cancer.

I guess it is more socially acceptable to have a pretty cancer like breast with its nice pink ribbons. Believe me that is said tongue in cheek as I don't wish cancer on anyone.

Really how much do we talk about our bodily functions, probably next to never.

What helped me change my thoughts was my doctor submitted a sample to the Mayo Clinic and told me since I had certain HPV markers that most likely was the reason I got anal cancer. HPV can be acquired quite innocently.  I do remember when I broke the cancer diagnosis to my boss I told him don't even think I had anal sex but I was comfortable talking a bit inappropriately at that job but I always thought that would be the first thoughts that passed someone's mind.  I never felt uncomfortable with my family but never told my own mother who is in a nursing home what kind of cancer I had - she thinks colon. You may want to share with your doctors your feelings and see what they say or if they suggest you speak to someone about it - you need to focus on your own health and healing. Hugs.

lizgino's picture
lizgino
Posts: 7
Joined: May 2012

Pem,

I too had anal cancer which has nothing to do with HPV.  I was diagnosed with the rare kind like you had.  If people asked I would say "Farrah Fawcett" cancer...they would look at me and say ohhhhhh, so sorry!  I did, however smoke (my last cig was on the way to see my doc when I was diagnosed, haven't touched one since!), and we have NO history of any cancer in our family.  Also, I did have cervical cancer when I was young (not HPV related either)... who knows...and actually who cares?  I was diagnosed with stage III, which was also in my rectum and pelvic and groin lymph nodes. 

I have on occassion told people "colo-rectal cancer" because when I would say Anal, they would give me a blank stare, like I was from Mars...not understanding.

All in all we HAVE/HAD cancer.  It doesn't matter where in your body it is...it is still cancer.  I'm 10 months in remission now.  I'm still cautious and am experience a huge amounts of side affects from radiation and chemo.  Just had a check up 2 days ago..no evidence of anal cancer YAY!!!, but waiting on results of CAT Scan for rectal and lymph nodes.

I remember being diagnosed the DAY BEFORE MY 50TH and the doc telling me it was the same as Farrah Fawcett.  In my mind I was freaking because I though "I'm dead" because she passed from it.  My MD explained Farrah had it twice, the first time she was treated and went into remission.  The second time she was told she would have to have a permanent colostomy.  She didn't want to go that way, and sought alternative options in Germany, which failed, and by the time she returned to the US for treatment, it was too late. 

DO NOT be ashamed or embarrassed by the type of cancer you have...EVER!!!  Be proud that you are surviving! 

mp327's picture
mp327
Posts: 3119
Joined: Jan 2010

I'm very glad you got all good news on your follow-up exam and I hope your scan results will come back clean!  Please let us know the good news when you get it!

Angela_K
Posts: 374
Joined: Jan 2011

I never experienced any embarrassment regarding where my cancer just happened to pop up and hope that those who are embarrassed can see that it's just another body part.  Nose, boob, foot . . .butt. :)  In fact, I corrected my mother who announced to her church congregation on one of my visits that I was recovering nicely from colon cancer.  

Why?  

It's important to me to break the silence and talk openly and comfortably about this disease to pave the way for more open discussion. . .and help put an end to the stigma for the benefit of future survivors. To me, we're prolonging any 'shame' and the stigma that can be associated with anal cancer by hiding it. (You will find that if you are comfortable with the topic, others will be too.)  Am I the only one who feels this way???

And besides, I bet I was the first person to utter the word 'anal' in the sanctuary of the Wesley United Methodist Church. 

Blessings to all,

Angela

 

mp327's picture
mp327
Posts: 3119
Joined: Jan 2010

I couldn't agree with you more.  The longer we avoid talking about anal cancer, the more stigma that will be attached to it.  We are proof that it can happen to anyone--ANYONE!

sephie's picture
sephie
Posts: 544
Joined: Apr 2009

i always say anal no matter who i am talking to....i do not care what they think and if they want more info i will answer any questions... i have sent about 8 women to my colorectal surgeon in another town who correctly diagnosed me after the proctolgist misdiagnosed me for almost a year..... ANAL ANAL ANAL..... everyone has to do what makes them feel comfortable..... in the very beginning i did refer it to Farrah's cancer but then said Anal cancer also......sephie

Lorikat's picture
Lorikat
Posts: 566
Joined: Jul 2011

The first thing the radiation nurse at MDA had me do was repeat, and repeat, Anal cancer over and over, and then said ok, now let's get rid of it!  LOL!

 

mariejo
Posts: 3
Joined: Apr 2013

I to had anal ca and hadto have colostomy as after the the first tx I went back to dr and it had returned so to save my life I get to carry a bag the rest of my life.snd i do mean the rest of my life.When people got anal ca yrs ago the only way was with a colostomy,but now they approch it with rad and chemo unfortunatly I mine returned so henc the bag.Can be convient at times!I am just happy to be here!

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I always say I had a rare cancer, 11000 cases a year and was lucky to be so close to MSK. If anyone asks further I say anal cancer like Farrah Fawcett. It is nice to associate a pretty face and hair with this disease!

I have ups and downs too and it's been almost two years.

All the best,

Sandy

mariejo
Posts: 3
Joined: Apr 2013

dont feel like u have to hide.I had it to but ended up with a colostomy and now I have to have a bag on the rest of my life,but i have no control over passing gas and at first it embarrsing.Then I decided that first of all passing gas was a normal body fuction,and just told people what I had and I had no control over it.It got to kinda funny after a while because when some one passed gas i always got the blame,but there is no smell with a colostomy,actually its kinda convient as I dont have to worry about going to the bath rm with it.So dont be depressed it wasnt ur falt u got ca and most all people understand.Take credit for all the pain u went through and are now healthy and enjoy ur family!

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