Hi Kana,

I, too, was diagnosed with epithelioid sarcoma in the upper thigh groin regioin.
My doctor and I both thought it was a benign cyst (no imaging was done when I
found the lump), but when she went in to remove it, she knew right away
something wasn't right. After the initial biopsy, she sent the slides to Dr.
Sharon Weiss for a second opinion. Dr. Weiss confirmed the dx and recommended
radiation therapy.

I saw a medical oncologist, radiation oncologist and a surgical oncologist who
were not sarcoma specialists, and all recommended a wide excision, but no
radiation. None of them had ever treated ES. My doctor suggested following up
with a sarcoma specialist, so I went to UCLA, where I had a wide excision and
excision of sentinel lymph nodes. Radiation was recommended by the sarcoma
specialist, so I went back home for radiation.

It was my good luck that at the time I was scheduled for radiation at the MD
Anderson Cancer Center outreach radiation clinic in my town, the regular
radiation oncologist was on vacation. His fill-in from MDA was a radiation
oncologist with a particular interest in ES (google "Matthew Ballo" for some of
his ES research papers). He prescribed 25 rounds of radiation plus 5 "boosts",
for a total of 30 rounds. It was painful and difficult, but I have always felt
it was the right thing to do.

None of the doctors I saw afterwards could decide whether or not chemotherapy
was necessary, so I had no chemo.

I've just passed my two year cancer-versary with no evidence of disease and
remain hopeful.

Over the past two years, the hardest thing has been finding a doctor with whom I
feel comfortable in placing my trust. ES is such a rare disease that when I
mentioned it to a nuclear medicine faculty member at work, he asked, "what the
heck is that?" In 30 years of private practice as a radiation oncologist, he'd
treated many sarcoma patients, but had never treated anyone with ES.

All the best to you, no matter what your decision.

--- 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
>