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son 17 has primary synvovial sarcoma in lung. Anyone else out there? It is so rare, I don't have much of a sounding board help

obie1203
Posts: 8
Joined: Mar 2011

My son has just been diagnosed with primary synovial sarcoma of his r. lung. he is just 17 years old!!! Is there anyone else out there that has the same diagnosis? It is sooo rare and I don't have anyone else I can speak with that has the same thing. HELP!!!!

cabbott
Posts: 1048
Joined: Aug 2006

I am so sorry that your son is having to deal with serious lung disease at such an early age. I tried googling your son's diagnosis and you are correct in stating that it is rare. But when I googled it I did come across some medical articles about similar cases. You might try putting his diagnosis ("primary synovial sarcoma of the lung") into your favorite search engine(s) to see what comes up. Keep in mind that medical frontiers change quickly and anything over 2 year old is probably ancient history by now. You could also try posting on the board for rare cancers. They might know other resources for contacting survivors with similar rare cancers. Starting a website is one way to help other survivors reach you. Sometimes your internet server allows for personal webpages if they are not a business. They might let you use that to start a site if you ask. Mind you, while it is good to search out other survivors with a similar diagnosis so you know what treatments have worked the best, lots of folks here may be able to help you with surgery decisions if surgery to remove the tumor is recommended. Many folks here, me included, have been through thoracic surgery and can share what worked and what didn't for them. Note: VATS surgery is easier to recover from than general surgery even though both get the tumor out. Mind you, we aren't doctors, just fellow patients. If there is any way to get your son to a really good lung clinic associated with a university medical school, your team of doctors will be in position to advise you on what is the gold standard treatment for your son.

obie1203
Posts: 8
Joined: Mar 2011

thanks for the helpful advice and for caring. best wishes to you

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hi Obie~Im sorry that you have to deal with this. My Mom has lung cancer with mets to other places. We went immediately to Sloan for a 2nd opinion and they were so amazing really!
Are you near anything like Sloan Kettering, because im sure they have seen it all.
Also possibly M.D.Anderson could help you?
There has to be somebody out there like one of these big cancer places...
Lots of thoughts your way...Sleepless in jersey

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