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proton therapy for synovial sarcoma

ksfolmar
Posts: 6
Joined: Feb 2011

Does anyone have experience with proton therapy for synovial sarcoma? I have synovial sarcoma primary to my lung. I am about to finish 8 rounds of chemo ( adriamycin and ifex) and I am going to MD Anderson in Houston to have proton beam therapy on what is left of the tumor. It is just one more way to make sure I kill the beast! Thanks

canadianmom
Posts: 4
Joined: Apr 2011

Good luck with your proton therapy. My teenage son has recently been diagnosed with
spindle cell sarcoma and his radiation oncologist here in Canada has referred his case for review by MD Anderson to see if he would be a good candidate for proton therapy. Not sure what will come of that but I am interested to hear what your experience is there. Proton therapy is not available in Canada. They do not want to do photon radiation here because of
the high risk of negative side effects due to his young age and the location of the tumor is
within millimeters of a large nerve bundle. He already had his tumor surgically removed but they could not achieve negative margins so there is the worry of microscopic disease left behind (at the time of surgery the Dr's still thought his tumor was benign). If anyone has experience with proton therapy with sarcoma I would be interested to hear about that as well. My son is not being considered for chemo, we have been told his only treatment options are surgery/radiation.

ksfolmar
Posts: 6
Joined: Feb 2011

Proton therapy is perfect for young adults and children because there is no side effects. The proton beam is charged only when it gets to the tumor site and then it can carry a higher charge than radiation because it will not go past the tumor site. When I went to Anderson for a consult, there were lots of children in the waiting room. I am going back in a few weeks to start six weeks of proton therapy. They will be using it on the margins from the tumor I just had removed. If you will google proton therapy, MD Anderson has a great web site about it. Push your doctors and insurance to get this approved. I went through an initial denial with insurance and finally got approval. Traditional radiation is not an option for me because the tumor is in the lung and close to my heart. Good Luck and God Bless! Kim

gina.h.mcgee
Posts: 1
Joined: Nov 2011

I just wondered if your son was a candidate for proton therapy??? If so, is proton therapy something your doctor can get covered thru our universal health care act? I really hope that your oncologist would fight the system for your son to offer some treatment options. I wish him all the best.

canadianmom
Posts: 4
Joined: Apr 2011

Hi Gina

I haven't logged in to this site in a long time and saw your friend request. I made a couple posts close to a year ago now when my son was first diagnosed with Spindle Cell Sarcoma. Back then his radiation oncologist was pursuing proton therapy for my son as
she thought that would be the best treatment for him, his case went to several different hospital boards for review as there were many different opinions on what should or should not be done. In the end he was not accepted for proton treatment, and in fact he didn't receive any other treatment other then the surgical removal of his tumour. It was a very
confusing and stressful time as not all the Drs at our Children's Hospital here agreed on
whether he should receive radiation treatment or not. Since his primary oncologist (radiation oncologist) was seeking and recommending proton radiation we thought that was the route we were heading. What we didn't know was behind closed doors when his case was being discussed, there were other oncologists who thought any type of radiation treatment for him at this stage would be too risky. In retrospect I am grateful that his case went to so many review boards and we had the benefit of many different Dr's opinions. Apparently proton therapy expenses can be covered by our medical system in certain cases and only if all the Drs agree that it is needed and there is no other radiation option available here in Canada. The US proton therapy center would also have to agree to accept them as a patient. Anyhow it is almost exactly a year from his diagnosis and my son is doing excellent. He is being monitored through MRIs every few mths and there is no sign of any cancer or tumour re-growth at this point. We pray it stays that way but so far so good and we may be one of the lucky ones that never has to face that situation again. He never felt sick or had to undergo any harsh treaments so other than the emotional toll it took on us we have come out of all this unscathed. There is always the knowledge in the back of your mind that it could return and we would have to re-visit further treatment but our lives have returned to normal now and everyone is doing great. Thanks for your concern, I know when we were going through all that I was reading everything I could online to try and educate myself because we really didn't know what we were dealing with. Very scary!

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