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What’s your biggest challenge in managing a desmoid tumor? 🌱💪
Living with a desmoid tumor can bring unique obstacles. Share what has helped you manage your symptoms or cope with the emotional impact. 💬 #Question
When there is nothing to do, "crying over spilled milk" doesn't make it better. Do what you can while you can
Scar tissue. I had numerous tumors grow thru organs which resulted in over 10 major abdominal surgeries over a 15 year period. A doctor at Denver General Hospital removed so much scar tissue this past March that I lost over two pant sizes. I would see if there’s a way to minimize the buildup of scar tissue. I had so much it closed off the ureter to my right kidney and I now only have one functional kidney
My grandmother used to have a saying - you can stay in bed and cry or get out of it and live your life. I choose to get out of bed. Days may not be great, but at least I am still alive doing what I can.
Just heard about Histroptosy. I might have misspelled it. It works by heat. Sounds promising but not sure it will work with Desmoid tissue.
My Desmoid Tumor is on my bottom part breast. Is this a common place to have it. I am still waiting to get in at MDAnderson for my treatment
Has anyone had cryoablation and was it successful?
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