--- 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
>
--------------------------------------------------------------------------------
From: kathy.zuber <kathy.zuber@...>
To: kana.yang <kana.yang@...>
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