Sarcoma - Cancer Message Board

Katrina33 · 11-12-2004, 07:58 AM

Hi--My husband has spindle cell sarcoma in the retroperitoneal. He was given 9-12months to live. This is his 6th reoccurance and was told there was nothing else to be done. He already has had 5 major surgeries. He is only 34 and I cant give up finding anything that he can try. Any suggestions would be helpful. Thanks Katrina

hillaryb · 11-12-2004, 09:17 AM

Oh my gosh, where is his tumor located? Twelve years ago I had a spindle cell sarcoma in my right thigh. I was fortunate that it had not spread and was successfully removed. Where was his first occurance? I rarely hear about these tumors. Im sorry I cannot help, please take care.

dyana · 11-12-2004, 02:47 PM

katrina, first of all i am so sorry to hear what your family is going thru. am i correct that this a tumor in the torso or stomach cavity? is it attatched to a major organ so the doctors can't do anything else or mets to a vital organ? have you gotten more opinions or gone to a sarcoma center? you have probably done all of the above. oh i wish i could help you. my 25 yr. old daughter had a round cell liposarcoma removed from her thigh last year followed by 7 weeks high beam radiation. then last week had her hip broke in two places and had a metal rod inserted into the femor bone that was destroyed by the radiation. then 3 pins inserted. she is doing alright, just alot of pain. why does this awful monster happen? i wish i could give you a website that has alot of people with the same disease as your hubby but it is against the healthboard rules. sorry i feel that is wrong that we can't but a rule is a rule. i really feel for you, i know how hard it is to function. you are in my thoughts and prayers. dyana

Katrina33 · 11-13-2004, 08:10 AM

Hi--

In Jan. 04 he was given 6months. I found after searching on the internet-the Mayo Clinic who were willing to do the surgery. So in April 04, they removed his aorta artery and replaced it with a graft, removed his left kidney, removed some small/large bowels, and removed some back muscle. In Aug 04 it was back on his intestine and the fatty tissue they wrapped around his graft. He had his 5th surgery and they removed some small intestine again. 4 weeks later it came back and was given 9-12months. He has had 13 rounds of chemo w/in the past 7 years. As you know chemo does not work on sarcoma. I have sent all his medical records to 2 more places for a second opinion and waiting to hear if maybe radiation will work. My husband does not want to do anything else he says he is tired. He has had 3 surgeries in a year. [ removed ] Thanks alot Katrina

garysgirl16 · 11-13-2004, 08:47 AM

I know this is incredibly hard to hear, but you said your husband does not want to do anything else. Maybe you should let him die gracefully with your full love and support. It may be time to start making final arrangements...maybe a last trip to the beach or something you've both always wanted to do but never could. Don't waste the time he has left to say goodbye. While you are running around trying to find a miracle, your husband is dying. Don't wait until its too late to take that last honeymoon or do something you both always wanted to do before you go.
You and your husband have both fought very hard for a long time. I am so sorry that you have to experience this in life. I know that I and many others will be praying for you both.
My sincerest apologies if this post sounds rough.
I watched my grandfather die of cancer and he chose to discontinue treatments after they gave him 6 mths to live. As a family, once that decision was made and we no longer focused on desperate treatments or miracles, we were able to accept his death and fully enjoy and make the most of the rest of his time here instead of running around doing research and false hopes and draining his last bits of energy.
But that is a decision that you and him will have to make together and no one else can decide it for you.....I only said all of this in deference to your husband saying he didn't want to do anything else.