Liposarcoma on the left thigh

lpapagno

reneesings said:

Yiannis,

I am a survivor of Liposarcoma (myxoid) of the left thigh as well.

Chemo is not a recommended therapy for this particular kind of cancer - it does not seem to effect the cancer. I am so sorry that your doctors did not know this.

I was mis-diagnosed the first time - the doctor told me it was a fat tumor. After my first surgery - he had the gall to walk to the waiting room and apologize to my mother (he had cut the major nerve running from my hip to my knee - I no longer have any feeling)... The one good thing he did was put in touch with a Liposarcoma specialist. Dr. W. Earl Brien. He is now at Cedars Sinai in Los Angeles. Dr. Brien is the best there is. He also sent me to the radiation therapist that he said he would go to himself. Dr. Brien informed me that chemo does not seem to work with liposarcoma, and that a very intense dose of radiation will work - I was stage 3 at the time. I had a second surgery and then went to radiation (only after the staples were removed and I could walk again - they removed 60% of my muscle).

I went through 8 weeks of radiation. Radiation does not feel bad at first. It will likely, after time, feel like a sunburn. You MUST take care of your skin, especially if you are fair. It makes you very tired physically, but I would recommend it on my own life. I would rather feel the pain of the sunburn and the exhaustion than the fear of losing my life.

Please also ask your oncologist or doctor about the chances of getting lymphedema and what to look for and how to prevent it from happening.

I have been cancer-free for 4 years and counting.

If I can help in any way, please let me know.

Did it shrink your tumor?

I start treatment on the 25th for five weeks. I hope it shrinks it, because the pain is unbearable at night is the worst lying down.