--- In Epithelioid_ Sarcoma@yahoogroups.com, "kana.yang" <kana.yang@. ..> wrote:
>
> Hi. I was recently diagnosed with epithelioid sacroma. I have undergone surgery to remove the tumor (which is in my upper thigh groin area). I am still recovering from the surgery, but I am thinking about radiation therapy. I don't know what to do because the studies don't show that radiation would increase my chances of survival, even though it would decrease the rate of recurrence. The doctors are letting me decide how to proceed, however, the consensus seems to be no radiation. It is only the radiation oncologist who believes it maybe beneficial at this time. I am hoping some of you may have gone through radiation yourself or have loved ones who have. Any advice one way or another? Thanks so much for your thoughts.
>
> Kana
>
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From: kathy.zuber <kathy.zuber@yahoo.com>
To: kana.yang <kana.yang@yahoo. com>
Sent: Friday, September 25, 2009 4:51:08 AM
Subject: Re: radiation therapy?

Kana, Welcome to our group. I'm sorry to hear of your diagnosis. My daughter had her original tumor in the groin area also. She had Chemo and then 49 radiation treatments. The radiation makes the skin like scar tissue and, when cut for surgery later, it does not heal together. This is just for your information. She did complain, after about 3-4 years that the skin felt tight and was causing some pain.

What I would strongly suggest is to go to a Sarcoma Clinic, if you haven't already. A place where they see a lot of Sarcomas and are on top of the latest treatments and trials. Most Oncologists don't even see a Sarcoma, much less know the best and latest treatments. In my daughter's case, our surgeon referred us to an Oncologist in the Detroit, MI area. She recommended that we get a second surgery, to remove wider margins, and that was all!!! If we'd done that Stephanie would have died in 2001!

A great website, for information and support, is the Sarcoma Alliance at sarcomaalliance. com.

Let me know what you decide.

Kathy

Kathy,

Thank you for replying and for sharing your experience with me. I am being seen at Stanford University Cancer center. I am scheduled to see an oncologist next week, who apparently is a tumor specialist. So, we will see what she recommends. I am also in the process of trying to get a second opinion about this at UCSF Cancer center. We will see what they say as well. I have actually had the tumor for at least 5 yrs, but it never really bothered me (and I never thought it could be cancer!) until the last two yrs and I just kept putting it off (had a baby, etc) until last month. It was a total shock when we learned it was malignant. My tumor was 3.1cm, and it has not spread (so far). I ended up with a butt lift and thigh lift in the process, but recovery has been more difficult than I expected. Nevertheless, I am very fortunate (all things considered) and I can't complain. I think because of the history here, the surgeons are hesitant to proceed with radiation. In any case, I will keep you posted. Thanks again for your insight. I am so glad I found this group and will look into sarcoma alliance. There are so few ES cases and I just happy to learn that there are others out there going through this as well. Your life just changes forever! Take care-

Kana