Anal cancer again after 10 years

StruTanToot

I have received a second anal cancer diagnosis 10 years after the first one. The docs say it’s not a recurrence after such a long period of time.

A surgeon where I live in SC wanted to schedule a colostomy as soon as my biopsy came back positive. He didn’t even suggest seeing any oncologists before surgery.

I don’t trust the docs here and am going to both Duke and UNC on Monday to see what they think. If I have to have a colostomy, I’ll definitely have it done in NC.

Radiation may not be an option since I had so much 10 years ago.

Have any of you had this experience? If so, please tell me how you were treated. Any advice, guidance, and suggestions are appreciated.

pializ

I am so sorry to hear your news. You are right to get a second opinion. I always understood that an APR would be the approach that would be used in such circumstances. Best wishes and keep us informed

StruTanToot

A colostomy has been recommended by doctors at both Duke and UNC as the first option.

Another option is have have limited radiation and chemo.

The third is to have the tumor removed with no colostomy. It's right outside the anus. The surgeon said healing would be difficult and might cause me worse bowel problems than I have now. The other surgeon said he could only offer me a colostomy.

I'm not sure what to do.

kateril

https://csn.cancer.org/discussion/comment/1693370#Comment_1693370

I'm so sorry you are in this predicament, and I'm praying for you right now. You say the tumor is right outside the anus... does it involve the sphincter muscles? My MIL decided to have tumor removed, and they got it all, but she did have problems with healing, until they packed the wound with some kind of crystals, then it healed.

StruTanToot

https://csn.cancer.org/discussion/comment/1693376#Comment_1693376

That’s good to know. There’s more chance of a recurrence though. Also, I have a lot of bowel issues from 10 years ago. Surgeon said just removing the tumor could make things worse. Still at a loss of what to do. Thank you for replying.

pializ

Could they do a temporary colostomy, remove the tumour and if they have got it all, eventually reverse the colostomy?

StruTanToot

https://csn.cancer.org/discussion/comment/1693460#Comment_1693460

I asked about that. There would be a long and painful healing process still. It wouldn’t hurt to ask again though. I already have a lot of scar tissue down there. Bowel movements are an ordeal. I’ve read that the permanent colostomy is the most curative. I’m not happy about it.

kateril

https://csn.cancer.org/discussion/comment/1693464#Comment_1693464

I wouldn't be happy about it, either! I've wondered if I'll eventually end up with colostomy, and can't get my head wrapped aroung it. So I went looking... and found blogs by young women who had IBD that was so bad they eventually had to get the permanent colostomy. They are amazing, showing pictures of themselves in bikinis, talking about how afraid they were, how healthy and fit they've become, how much better their lives are now that they don't suffer from the pain and debilitating effects of disease. It gave me hope that no matter what comes, I will adapt to it, and make the best of it. Everyone's experience will be different of course, and the decisions you're facing are emotionally stressful. I wish I had saved the links to some of the blogs. Search for and reach out to people who are sharing their stories and journey of living with colostomy. They are out there, and they're offering to share with and support others.

pializ

https://csn.cancer.org/discussion/comment/1693464#Comment_1693464

I understand your search for an alternative to a colostomy. It does sound though, that with so many ongoing bowel issues, it could actually change your life in a very positive way. Keep asking though because there may be other answers out there that include other options. Are there any treatment trials etc?

eihtak

Hi guys,

I haven't been on here for far too long and now see the format has changed a bit. I am so sorry to hear of your recent diagnosis. You may or (may not) remember me. I was initially dx with anal cancer stage 3b in 2011, breast cancer in 2012, metastasis of anal cancer to my lung in 2015 and a second anal met to airway of lung in 2018. I've had way more than any safe dose of radiation, surgery to remove and reconfigure body parts, and plenty of toxic chemo running through my veins.

As part of my initial treatment back in 2011 for anal cancer I had colostomy surgery (with the possibility of reversal once healed from radiation) but... the chance of success when the time came was so slim (I consulted a couple doctors) that here I am 11 years later living a full active life as you've heard some do with a permanent ostomy. There are different types of ostomies and much depends on the surgeon, their preference, your body type, reason for etc. Mine is called a loop ostomy which does not involve removing the anus or rectum (though they are out of commission) as the bag catches all waste, but the healing time was much less.

I won't lie, it was quite an adjustment and I got a lot of help from an on line support group as well as a local one at my clinic that was in person. This is an area that unless you live with, one can not truly relate. I learned so much about the wide variety of products and different manufacturers that I never knew existed. Please if this is your path, (hope I'm not responding too late) consult with what is called a wound care nurse. They should help you get started on the right foot with any ostomy questions as well as to help with the location of opening (stoma) on your body.

As I said I won't lie on the adjustment, I also wont lie about how once there, living with an ostomy is nothing like the big scary image that goes through your mind prior to having one. Most people I meet have no idea that I even do. I travel, swim, wear fashionable clothing, chase after grandkids, and enjoy life! Are there occasional bad moments because of such, sure, but its really just a minor inconvienence if I consider the alternative.

Please feel free to ask for any details if questions arise...until then, I wish you many years of health and loving life!

katheryn

mxperry220

https://csn.cancer.org/discussion/324734/anal-cancer-again-after-10-years

I recall in 2008 after I was treated for anal cancer the doctors told me if there was a recurrence, I could have no more radiation as I had the maximum radiation allowed.