I don’t know if you saw my reply to Kana, but
I have been cancer free for over two years. I go to Hillman Cancer Center in
Pittsburgh and I went to Dana-Farber in Boston for a consult. I had 4
surgeries, 29 days of radiation, and 6 rounds of chemo. I go in November for
another CAT scan. If I could be of any help, please contact me.
Tom Lamb
From:
Epithelioid_Sarcoma@yahoogroups.com
[mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Timothy Neuman Sent: Friday, September 25, 2009 11:25 AM To: Epithelioid_Sarcoma@yahoogroups.com Subject: Re: [Epithelioid_Sarcoma] radiation therapy?
Hey there Kana,
I have had Epithelioid Sarcoma for over a year now, and I
have seen many doctors, unfortunately none of them can agree on the proper
treatment for this type of cancer, it is to rare and very few doctors have
ever seen it or worked with it. I'm scheduled for my second surgery on Oct.
16Th and at that time they are going to use radiation on me while they have
me on the table and open. Its new and not to many hospitals have the machine
to do this. but it save the skin and tissue from being damaged. My doctors have
also said that nothing would cure this type of cancer and that is will keep
coming back, but in my case they all agree that chemo would not work on me,
so go figure! I have Epithelioid in my Chest. Good luck with which ever way
you go with your treatment and remember to keep a positive attitude during it
all, that's more then half the battle to live longer.
My Positive thoughts go out to you,
Tim
--- On Thu, 9/24/09, kana.yang <kana.yang@...>
wrote:
From: kana.yang <kana.yang@...>
Subject: [Epithelioid_Sarcoma] radiation therapy?
To: Epithelioid_Sarcoma@yahoogroups.com
Date: Thursday, September 24, 2009, 2:31 PM
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.
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...
Hey there Kana, Â I have had Epithelioid Sarcoma for over a year now, and I have seen many doctors, unfortunately none of them can agree on the proper...
Hi Tim, I don't know if you saw my reply to Kana, but I have been cancer free for over two years. I go to Hillman Cancer Center in Pittsburgh and I went to ...
Hey Tom, Â Thanks for responding to my email. Wow two years cancer free, that's great! I wish you many more to come. Where did you have Epithelioid Sarcoma?...
I was in stage IV when mine was found. It was located in my upper left thigh. The surgeries I had were my initial disection and removal then I had 7 lymph...
Hey Tom, Â Thanks for all the information, I still don't know what stage I'm in but this will be the second tumor removal in my Chest. I'm being treated at...
The Corporate Angels Network is based out of White Plains, New York. They try to arrange flights on corporate jets for patients. I flew on a Parker-Hannifan...
Hi, Tim. Thank you for your email and for sharing your experience with me. You are right that the doctors can't seem to agree on what the best thing is for ES....
Hey Kana, Â Thanks for getting back to me, here is the name of my doctors at UCSF they are a great team and care alot about their patients, they specialize in...
Hi, Tim. Thanks for giving me the names of your doctors. I will try to get in to see at least Dr. Gottschalk if not Dr. Jahan as well. But first, I have to...
to give you another example of hope.... my mom was first diagnosed with ES in 1997, had a surgery (it was sort of on the inside of her thigh/knee) and no...
Becky, Thank you for sharing. That is a wonderful story and I am so happy to hear about your mother. That was really comforting news. This week has been one of...
thanks for the good wishes...and you keep that hope and fight - for you and especially for your daughter. I have absolute hope and faith that you will be...
Hi! My sarcoma was on my forearm. Before I was diagnose I had a minor surgery on my forearm then after that my doctors decided to try to shrink my tumor by...
Chilli, Thanks for sharing with me your experience with radiation and the names of your doctors. I will keep them in mind as I continue to think over this...
Hi. So, tomorrow I am going to meet my oncologist for the first time. I am trying to think of questions to ask her. You would think that I would have a ton of...
It is important for him to be as honest as he can be. If he has not had a ES patient, does he know a doctor that has. The greatest thing I always ask a doctor...
Kana, Tom is so right! Ask your doctor how many ES patients he/she has treated. If your doctor says, "oh, we see sarcoma patients all the time", ask exactly...
Dear Kana, Â One of the most important things to ask your doctor is if she can determine what stage your ES is in based on the pathology report. also ask her...
My prayers are with you, Kana. Good luck. I would recommend that you write all of your questions down, so you don't forget because you are nervous. VERY...
Hi! Kana if you can try to look for a doctor who is an orthopedic oncologist from my understanding doctors with this title has experience with this type of...
Hi Chilli, Maybe I've missed something, but why would an orthopedic oncologist be the best to work with ES patients? ES is a soft tissue sarcoma, not an...
Hello, My 20 yr old daughter was diagnosed with Epitheliod Sarcoma in May 2009. When she had the tumor removed from her left hand, we were told the tumor was...
How did things go? Please let me know. Tom Lamb From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Kana Yang ...
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...
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