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Synovial Sarcoma - Online Support Group

Recurrence after 5 years, Neck Originally, left lung diagnosed 7/23/12


#1

Hello,

I have been a survivor with no recurrence (Sept would have been 5 years). My original site was my neck inbetween my cartiod artery and jugular vein. After many scans etc I remained clean. In March I insisted on chest ct scans (I would request every time and be told it was not necessary),

In March 2012, when they finally did do the chest scan I asked for, (btw they looked up, I had not had a chest scan in 3 years). I was diagnosed with a small form of what they felt was mucuos that they felt I had aspirated into my lung from my swallowing problem. My oncologist sent me to a lung cancer dr. I do go to a University Hospital in Florida.

But I am now seeing all of these great info that was not around when I was first diagnosed. They are talking about taking my lower left lung out and they will move fast. I am scared, I do not know the course of treatment for afterward and I am seeing I may not be in the right place for SPECIALIZATION in synovial sarcoma. I am also not the normal stats for this disease.

I am a woman, was diagnosed at 43. I was asked immediately if I ate red meat, coincidentally I have not eaten red meat since I am 11 years old, than they asked about smokin. Gave up that in 99. They are baffled by my case.

I feel I should look into MD ANDERSON in orlando or Houston? Any suggestions? Anyone have any similar experiences? I am very very scared.

Thank you for listening,

Jodie


#2

There are several sarcoma centers in Florida.

Moffitt Cancer Center:

http://www.moffitt.org/Site.aspx?spid=2B5BD198045745AB817E6119CC099718

Mayo Clinic:

http://www.mayoclinic.org/sarcoma/

The Miami Sarcoma Group:

http://miamisarcomagroup.com/pages/practice.php

University of Florida Shands Cancer Center is also supposed to have a sarcoma team. But your experience there doesn't sound very good. The questions that were asked do sound like coming from somebody unfamiliar with the disease.

If you want to try MD Anderson, you should go to Houston. That's where the specialists are...


#3

Thank you Elodie,

I called MD Anderson in Orlando over the weekend, but will certainly call Houston. I hear they are really the ones who know more about SS than anyone in the country.


#4

my daughter Joan started with ss in her right lung. she has been vegetarian since highschool and does not smoke. Last August she had surgery to remove 2/3 of her lung. she was 34 at the time -- she also did a lot of research on treatments. and found proton therapy to be most recommended treatment. there was a researcher in boston that originally used it for lung cancer. he moved to florida and she foung him there and talked to him personally. she managed to get the proton treatment in Il on her lung approved by her HMO. I will ask her for the name of the researcher in Fla. but I have also read about MD anderson in TX as a very good place to go for SS. she is still experiencing coughing and fatigue. to add to this problem she also had thyroid cancer in her 20's - so she had her tyroid removed. I wonder about SS that starts in the lung and her future, she tells me not to worry.