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retroperitoneal liposarcoma

appey
Posts: 4
Joined: Jan 2009

My husband was diagnosed with a retroperitoneal liposarcoma and had it surgically removed on November 18th. It was low grade, stage 1. He is now beginning his 3rd week of radiation therapy. Is there anyone out there who has had this type of cancer and had radiation therapy? Has anyone had a successful treatment for their sarcoma other than radiation or chemo?

rustyp
Posts: 2
Joined: Jan 2009

my last two surgeries were not followed up by radiation or chemo. nor is my next surgery. my dr at mskcc did not recommend either. please keep us posted on your results.. good luck

appey
Posts: 4
Joined: Jan 2009

Thank you for replying. My husband is beginning his 4th week of radiation, but we are in process of seeking a second opinion from an oncologist specializing in sarcomas. We are so uncomfortable with the cost of the radiation- one kidney will be fried and a small portion of his bowel may be damaged. And still there is the chance of recurrence. You mentioned your last 2 surgeries. Did you have radiation or chemo following the original diagnosis and surgery? It sounds like you have had recurrences. If you feel comfortable please share more with us. Thank you and our thoughts are with you.

bmscan's picture
bmscan
Posts: 33
Joined: Apr 2007

I have had 10 years with 7 tumors with radition, but no chemotherapy.
I suggest you read my paper on this site "Liposarcoma: 10 Years, 7 Tumors... Still beating the Odds" that reesides on my page.

...It should be informative and some uplifting...

appey
Posts: 4
Joined: Jan 2009

Thank you so much for replying. We want to read your paper. I am new to this site. Can you tell me how to access it?

appey
Posts: 4
Joined: Jan 2009

You are a very couragous survivor. I appreciate you sharing your journey with us and others who are going through similar journeys. It helps.

bmscan's picture
bmscan
Posts: 33
Joined: Apr 2007

I am glad you were able to find it. I have NOT found this site easy to navigate. I only wish I could get it out further to others with Liposarcoma.

As for your husband's condition, I suggest you would ask about possible use of cyberknife radiation. It is more finite in its effect (and therefore less side-effects!). Beyond that, step by step AND none of it moves as quickly as you would like.

howell58
Posts: 12
Joined: Apr 2009

Hello-just joined this message board and noticed your story.
My husband was diagnosed with this disease two years ago. Unfortuntely, they thought it was kidney cancer, removed the tumor and one kidney, but there was a portion of cancer left behind that for some reason, they did not know about.
Took pathology almost 3 weeks to figure out what type of cancer it was and then got referred to Sloan Kettering in NY. The surgeon there took a wait and see approach to this, to watch its behavior, etc. He said radiation has not much of an effect and could damage other organs. One year later, found a small spot on his lung and removed that successfully. Now, 2 years later, the piece that was left in his abdomen has grown 1 cm and they are scheduled to do surgery again on the 16th of November.
My husband is 47 yrs old and we have two childrem 15 and 12. I am scared to death, as I understand this thing keeps coming back and the only treatment is surgery.
I know it has been months since you posted your comments, how is your husband doing and how are you?
Sue

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