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. I notice you stated that you are being treated at UCSF. I live in the SF Bay area as well and I am being seen at Stanford. May I ask who is the radiation oncologist you are seeing at UCSF? I was going to try to get a second opinion there. Maybe I can go see the person you are seeing about my situation and get their thoughts!! Would you mind? Also, who is your medical oncologist?
I think I mentioned before that my tumor was in my left buttock/groin area. It was 3.1cm and fortunately, it had not spread to the lymph nodes or chest at this time. I think because of this and the clean margins, the tumor board at Stanford did not
think I needed to undergo radiation. But I would like to see what UCSF thinks.
Good luck with your upcoming surgery. You are right that remaining positive is half the battle. I am still in shock, I think. I try not to think too much, but it is hard. Take care and stay strong.
Kana
From: Timothy Neuman <star.designer@...> To: Epithelioid_Sarcoma@yahoogroups.com Sent: Friday, September 25, 2009 1:01:25 PM Subject:
Re: [Epithelioid_Sarcoma] radiation therapy?
Hey Tom,
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 UCSF in San Francisco they have some of the leading Sarcoma doctors there. They plan to do radiation on me while I'm still in surgery that way they can hit only the spot where the cancer was, and no skin will be damaged. What is Corporate Angel Network? do they cover travel? Thanks for taking the time to answer my questions, your information is a big help to me and I appreciate very much.
Take Care
Tim
--- On Fri, 9/25/09, Tom Lamb <lambli@zoominternet .net> wrote:
From: Tom Lamb <lambli@zoominternet .net> Subject: Re: [Epithelioid_Sarcoma] radiation therapy? To: "Epithelioid_ Sarcoma@yahoogro ups.com" <Epithelioid_ Sarcoma@yahoogro ups.com> Date: Friday, September 25, 2009, 12:00 PM
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 nodes removed, of which 4 were cacerous. I then had 10 removed of which 4 were cancerous. I then had exploratory surgery to check my liver. After all the surgeries in Pittsburgh I went to Dana-Farber in Boston to get my chemo cocktail as well as my radiation options. I recieved my treatments here in Youngstown. I would reccomend both Hillman Cancer Center in Pittsburgh as well as Dana-Farber in Boston. I don't know where you live but I used the Copprate Angels Network to get to Boston. Feel free to contact me further.
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? it seems to hit everyone in a different place. Were your surgeries minor or major ones? And I'm very interested in hearing why your doctors came up with your treatment plan. What stage were you in when you found the cancer?
Once again, congrats on being two years cancer free, its great to hear that others are fitting this type of cancer and winning. Keep it up!
Tim Neuman
--- On Fri, 9/25/09, Tom Lamb <lambli@zoominternet .net> wrote:
From: Tom Lamb <lambli@zoominternet .net> Subject: RE: [Epithelioid_ Sarcoma] radiation therapy? To: Epithelioid_ Sarcoma@yahoogroups.com Date: Friday, September 25, 2009, 10:50 AM
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 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@yahoogro ups.com [mailto:Epithelioid _Sarcoma@ yahoogroups. com] On Behalf Of Timothy Neuman Sent: Friday, September 25, 2009 11:25 AM To: Epithelioid_ Sarcoma@yahoogro ups.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@yahoo. com> wrote:
From: kana.yang <kana.yang@yahoo. com> Subject: [Epithelioid_ Sarcoma] radiation therapy? To: Epithelioid_ Sarcoma@yahoogro ups.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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