Wow! Thank you everyone, so much for your replies.
I spent much of today thinking and talking with family about my options. I believe I have decided to go ahead with surgery. I just don't believe I could live comfortably with the worry and doubt that has consumed me the past 4 months. The what ifs and what could have been if there was a reoccurrence, that didn't work out in my favor. Having two young children and hopefully a long life to live ahead of me has played a large roll in my decision. Maybe a few years down the road my choice would be different, with more studies and concrete numbers. But its right now, and I feel as though this is the right choice for me.
I just wanted to clarify, when I said that the doctor told me that the cancer would be nearly impossible to beat a second time, was before I started treatment, from a general surgeon (whom is not treating me), regarding my course of treatment. It was not directed towards the salvage surgery. I didn't even know that was an option at the time.
Karen, your post helped me
. You're right, it's just that, a stoma. There isn't anything ugly about it. It could possibly be my life saver and shouldn't deter me from the decision that lies ahead.
Happy New Year everyone! Here's to a happy, healthy 2017
I am actually relieved that you made this decision, and I'm alarmed at so many willing to play veritable Russian Roulette (so?) with something as deadly as cancer.
This is for the CRs reading these posts and now considering taking this approach, not for the ones who already made the decision. I hope you are NED forever.
When I first joined this board, I was mostly looking for other IIIcs who were still NED after 5 or more years. Each one I saw was a nugget of hope. I always looked at the signatures. In the last three and a half years, Jaynee is the ONLY member I can think of who has avoided surgery and is still NED more than 5 years later, although I'm sure there are others. And she didn't just do watch and wait, as she explained. Doing biopsies can miss trace cancer cells. That means you run the risk of leaving cancer in your body if you only trust in the clinical response. Most of the posters doing wait and see now saying they are NED are only a year out. The ones who did do watch and wait and no TME and ended up with a recurrence and died because of it are not here to warn you not to take the risk. I do know of one.
Is there an actual clinical trial showing the salvage surgery has the same results or just proponents personal statistics? If trials, how many trials and how many participants? This number of 12 people I heard is compared to tens of thousands who have done standard treatment. Do you think you would ever hear about many patients dying from this approach? Who would tell you? Especially if this is mostly outside of the US. And the biggest question of all...
Is just one dying from a recurrence enough risk for you? To avoid a colostomy you would get anyway if you did the salvage surgery?
I told my surgeon to do whatever he needed to do to SAVE MY LIFE, not my sphincter. My kids need their mom. I would never take a risk like that even as a IIIA with a complete response because of my kids. Yes, I have a bag. I hope it saved my life. I won't know until I am NED long enough to say I'm cured. I still get scared when I have shooting pains that the cancer is back. Where are all the posters who are 10 years NED who did waiti and see based on just a clinical response? I know the procedure is fairly new, but that would really worry me. Some are considering doing this simply based on someone saying, "Well, my doctor said...."
Here is a story of someone with a CR who did wait and see, had a recurrence, and later passed away after the cancer spread. He states very plainly that wait and see was a "mistake." Yes, he may have had a recurrence anyway. But there was no way to know once he took that gamble. His loss of life is not part of any official trial or statistic for this procedure. It's someone you would never have happened of who took the gamble and lost. Only hearing from living winners can make it seem like everybody wins.http://www.teachingcancertocry.com
Standard treatment that has been proven to save lives is not radical surgery. It's life saving surgery. This is about your life.
Again, I am not speaking to the ones who have already made the decision. But I wish you would wait to encourage this approach when you yourselves had been NED 5 years or more. I have always respected Jaynees decision to do TME rather than surgery, and I think she is in a good position to be an advocate as a long term survivor. New patients are in denial, and it's very hard to face the reality that you could die from this. Hearing they could just skip a scary surgery might be music to their ears, as it was to Ezra who busy and eager to just get back to his normal life. It seemed like a good idea at the time.
Anyway, I just wanted to firmly state the opposing view. I might have been a CR if I had waited 8 or 10 weeks. I will happily wear my bag the rest of my, hopefully, long life with no regrets.
Oh, and Ezra talks a lot about irrigating on his blog which is the next best thing to not having a bag. I got irrigation supplies after reading his blog. I find it too time consuming to do regularly, but it's a nice option if I don't want to have to wear a full sized bag like under a fitted dress. I also had read about an irrigator who just wore a bandage on her stoma at the beach so she could still wear a bikini. A stoma is not the end of the world.