My sister has carcinoid and January 2007 was her fourth year since diagnosis. She has now been out of work for a year and the Doctor's have finally signed her LTD paperwork.
She is getting significantly worse and 5 new tumors found in last Octreoscan. Her two original tumors were in left bronchial tube and in right lung. No originiation point has even been found. She has atypical carcinoid.
Does anyone/can anyone state anything about life expectancy? I know average is 5 years. Just don't want to face the inevitable I suppose and know I have to start making plans.
I am sorry your sister has this. But I am here with good news , IF you treat it with CHEMO (ask your doc) or go to www.carcinoid.org for more on that, I am 44 years old have had the atypical tumors in my lungs , sac of the heart ........etc See what I am getting at I treat this like its going to kill me and so should your sister BECAUSE IT WILL I have had this since 1999. I am still here and kicking. I have a lot of surgerys and chemo but I still get another year !!!!!!
Hope this works out for you and her.
carcinoid dx 99
Facing reality is a good thing, but please do not put too much store in "life expectancy" numbers. I was told that prognosis for me (pancratic cancer) was about 5 years, but with chemo and radiation and surgery, I plan on living much longer than that. Prepare for the worst, live for today, and plan for the future. One person (on the Cancer Survivors Network) told me that as long as we are on THIS side of the grass, its a good day! Good luck with your sister, let her know that others are thinking good things for her AND you. :-)
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