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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 2 days ago | Replies (778)Comment receiving replies
I have a very rare Sarcoma as well. It's called, Malignant Gastrointestinal NeuroEctodermal Tumors. When I was diagnosed in 2017, there were only 29 documented cases in the world. Most recently, I learned that number was about 120 cases worldwide. So it's still a fairly new diagnosis and unfortunately scientists/doctors don't have many answers for treating it since it's so rare and patients pass away rather quickly from it. I have been struggling to survive for 6.5 years now, but my body has gone through a lot and I'm not sure how much more treatment I can have because I'm so beaten up by all the treatments and the disease. If anyone else out there has this, I would love to connect with you! Kris
Replies to "I have a very rare Sarcoma as well. It's called, Malignant Gastrointestinal NeuroEctodermal Tumors. When I..."
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Wow! You have been going through so much. Just the name of this diagnoses is scary. I have a synovial sarcoma, one to three in a million get this rare cancer. For two years I went every 3 months for a CAT scan. This was in 2019. Now I go every six months since this is a reoccurring cancer. This, too, was in my gastrointestinal track. Was operated on in 2019 and growth removed. 2021 had colon cancer, operated and no further follow-up needed. Yearly endoscopy and colonoscopy. Advice: Stay positive! Don't worry about the past....stay present and be happy. Enjoy. Take care of yourself.