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What if...

eihtak
Posts: 833
Joined: Oct 2011

I just had a thought, most of the recent posts are from people who are newly diagnosed or just 1-3or4 yrs post treatment. The majority of us are doing well, and although side effects are there we seem to deal. What if AC recurrs, is there a standard treatment like there was the first time? I'm guessing it becomes pretty much a case by case situation, just wondering and hoping we never have to know. As always, all in my prayers.

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mp327
Posts: 2888
Joined: Jan 2010

You have asked a very good question and I would encourage you to register on the website for the National Comprehensive Cancer Network (NCCN.org), as they have included guidelines for treatment of recurring anal cancer. I don't want to discourage anyone, but the usual protocol is to do APR surgery with permanent colostomy. That is the reality of this disease when it returns. That being said, there are clinical trials that may be available, so anyone facing this dilemma should definitely do a search for those and ask their doctor to do the same. There is always hope for something better out there! Like you, I hope to never have to know anymore about this than I do right now. I am staying in positive mode!

eihtak
Posts: 833
Joined: Oct 2011

Thanks for the info. You are so knowledgable, please continue to post as time goes on as you are a great sorce of help for all of us. On the possible future colostomy I guess I'm ok....already have one as a constant reminder of my journey with AC. It was supposed to be reversed but now looks doubtful. I hope as I said we all never have to go round 2!!!! For anyone reading this, now concerned on the colostomy issue, don't worry, it is rarely the case and if so becomes easily managed in time and does not effect my quality of life! I will check with NCCN.org because I'm just curious and right now am at a point where I feel anxious about cancer ever being really gone! I am trying to get past this and look forward to the day where I can make it through without thinking about it for a good length of time. Also, Martha I think your marathon is this weekend....best of luck to you, run for us all! As always, all in my prayers

eihtak
Posts: 833
Joined: Oct 2011

Sorry....think its next weekend??? Just the same, good luck!

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mp327
Posts: 2888
Joined: Jan 2010

Yes, it's on the 21st. Thank you for the good wishes!

danker
Posts: 735
Joined: Apr 2012

a member of the colo-rectal support group has a permanent colostomy because the cancer came back at the margerine(sp)
Living with a colostomy for many years they report a fairly normal life. apparently changes in bag technology has made living with one much easier. Hope none of us survivors ever needs bags again.

eihtak
Posts: 833
Joined: Oct 2011

I already have one. The decision was made by myself and team of docs before standard treatment of chemo/rad. It was supposed to be temporary, but one thing led to another and now is most likely my pal for life. It took some getting used to but if it is of help to anyone is not much of a problem anymore. I am physically active, take a yoga class, and has not lessened my quality of life. Also I did not have to endure painful bowel movements during radiation. There certainly are people in the world with much bigger issues that DO affect their quality of life, and you never know, there may be someone you see everyday that has one and you don't know it!!!Colostomy bags are used for people with a variety of health issues involving the colon. People with Crohns Disease often need one too. There are people with 2 or 3 bags of a slightly different nature, and tho it takes some learning, these people manage also. I think most people are just uneducated about the whole process and so think the worst, and as I said....not that bad after all. I do agree tho, I hope no one else needs one.

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