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A Question From stormyg About Rare Cancers

  • stormyg's Avatar  

    Question 3 months ago

    stormyg posted a questionRare Cancers

    Incredibly rare heart cancer....

    My husband has been newly diagnosed with synovial sarcoma (a sarcoma typically found in joints) in his heart. He had to undergo emergency open heart surgery to remove an orange size tumor from his heart, but unfortunately they were not able to get it all as it goes through the wall of his heart. We have our first oncologist visit tomorrow to find out any and all information we can regarding the plan of attack. But we are not finding any information on it as it is incredibly rare....has anyone else out there heard of or experienced this?

    • leepenn's Avatar

      Answered Question 3 months ago

      leepenn answered

      Oh man - I am so sorry for his diagnosis - what a difficult time for you both. I know absolutely nothing except for what a quick pub med search produces... which, as you say, is very little.

      Good luck tomorrow....

    • cranburymom's Avatar

      Answered Question 3 months ago

      cranburymom answered

      So sorry that you have to deal with this...
      I did a quick search and found this. But it is old.

      Primary Cardiac Synovial Sarcoma: A Case Report and Brief Review of the Literature
      Brian Boulmay,1* Gary Cooper,2 John D. Reith,3 and Robert Marsh1
      Sarcoma. 2007; 2007: 94797. Published online 2007 July 5. doi: 10.1155/2007/94797 PMCID: PMC1931497

      You may want to try clinical trial site, www.ct.gov
      let me know if you need more information.

    • stormyg's Avatar

      Answered Question 3 months ago

      stormyg answered

      So not the best news in the world. My husband is maybe looking at a heart transplant, if it can get approved. Synovial sarcoma is a cancer that spreads so it might not be approved. If its not, then maybe some cutting out and rebuilding of his heart if its not too evasive. If neither of those are options, then he is looking at staying on chemo for who knows how long, just to keep it from growing.