stormyg's Avatar

stormyg

Paulden, AZ

  • Spouse/Partner: Rare Cancers
    Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: 5 months ago, Male, Age: 32
  • DaveWaz's Avatar  

    Wall Post 3 months ago

    DaveWaz wrote on stormyg's wall

    Welcome. Thank you for taking the time to register and share your husband's story. I know we have several people on the network with rare cancer experience so when you are ready please do not hesitate to reach out to them. They are here for the same reasons you are.

    I saw your "Update" and "Question" where you posted about the rarity of your husband's cancer. I don't think we have anyone who shares that specific diagnosis as of now. You will get tremendous support from our WhatNext-ers and I know they will share their experiences. But if you also want to reach out to someone who might had experience with this specific diagnosis, you might also want to reach out Imerman Angels (www.imermanangels.org). They might also be able to help.

    Please keep us posted and let us know what we can do to help. We will do anything we can to help make this journey any easier for you as possible.

    - David, Founder, WhatNext

  • stormyg's Avatar  

    New Follow 3 months ago

    stormyg

    is following Incredibly rare heart cancer....

  • stormyg's Avatar  

    Question 3 months ago

    stormyg posted a questionRare Cancers

    Incredibly rare heart cancer....

    • 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.

  • stormyg's Avatar  

    Experience 3 months ago

    stormyg

    Oh No (Diagnosed): 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?

  • stormyg's Avatar  

    New Follow 3 months ago

    stormyg

    is following KarenG_WN