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To Chemo or Not to Chemo

legaleagle
Posts: 4
Joined: Aug 2013

Hello Everyone,

I've been patrolling the threads for a couple of weeks now and have really been uplifted by the great survival stories that I've read.  I've recently entered into the world of sarcoma (leiomyosarcoma, to be exact) by virtue of my husband.  He was recently diagnosed with leiomyosarcoma of the liver (which has been determined to almost certainly be the primary tumor).  The tumor was a little over 10 cm and was completely resected, along with 66% of his liver.  The surgeon and the oncologist both believe that all of the tumor was resected in the surgery.  Now the question is how to move forward.  Our local sarcoma oncologist does not recommend chemo at this point.  Although he concedes that there may be a chance of micromets that are currently undetectable, he believes that the risks of chemo far exceeds any benefit that may come from it.  He said that the statistical data just does not provide enough evidence that adjuvant chemotherapy provides much of a survival or reoccurance benefit.  He recommends that my husband stick with a schedule of CT scans every four months.  According to him, if chemo is needed down the line, then we will cross that bridge when we get to it.  Doing chemo now may limit his options later if mets are discovered.

We are scheduled to meet with another sarcoma oncologist at MD Anderson and we've been told to expect that he will recommend chemo in order to try to kill any residual micro cancer cells that may still be in the area.  As all of you know, chemo can be very harsh on the body and we only want to use it if it is necessary.  On the other hand, we want to find comfort in knowing that we have done everything possible to beat this monster.  Another wrench in this is that my husband is a survivor of a childhood cancer (the radiation treatment of which may have made him susceptible to the leiomyosarcoma now).  Therefore, he had already undergone radiation, chemo, and surgery when he was very young.  There is a chance that any future tumors may be even more resistant to radiation and chemo than others since his body may have created some type of resistance. 

Has anyone been in this predicament?  Have you had a primary tumor resected with no evidence of mets and did not undergo chemo or radiation afterward?  If so, what has been your experience?  For others who have undergone chemo/radiation after surgery when there was no evidence that the tumor had spread, can you give me your thoughts on why you decided to go forward with the treatment?  We are really at a crossroads here, so any help is greatly appreciated.  Thanks!!

LindaDawn
Posts: 25
Joined: Feb 2009

I had my liver resected and had no evidence of spread.  i underwent chemo to get those micro mets if there wer any.  I do not know if I made tha right choice or not, but for me I wanted to do everthing I could and do not regret my decision.  I am four years out of treatment and all clear.

lizzyb
Posts: 1
Joined: Sep 2013

I am kind of in the same situation as your husband. I had radiation 5 years ago on my leg. I had a solitary met to my lung hat was removed 5 weeks ago. Doc is at MD Anderson as well. The tumor was abutting my pericardial sac And was completely encapsulated. I had fluid around the tumor that tested negative in cytology......margin next to the heart was small. Chemo was offered and I have decided to decline for the exact reason your doc stated. I don't believe chemo is something to take lightly. I really can't put it it any better words than your doc did. My original tumor was in a distal extremity, had great margins, and 25 radiation treatments. The simple fact is, there's no test that can diagnose micro mets. They may be there, they may not. i have decided that if anothet tumor shows up, at least I can see if the chemo is working or not. if not, the "cocktail" can be tailored to ME. 

Oneinabillion
Posts: 11
Joined: Feb 2013

I guess by now you made your decision so what did you do?

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