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Myxofibrosarcoma: What treatments did you have?
Sarcoma | Last Active: Oct 7 12:35pm | Replies (104)Comment receiving replies
Thank you so much Michelle and Chuck. I can’t tell you how much your words mean. Good to hear you both are doing well! I’m going be treating at Froedtert & the Medical College of WI. They are supposedly a top ranked center but one of my fears is being such a rare “c” they may not be as experienced as I need. Can you give me some tips/questions to ask at my appointment next week? Can I ask where you all have been treating? Thank you again, you have restored some of my faith and emotional well being, it’s really so appreciated!
Replies to "Thank you so much Michelle and Chuck. I can’t tell you how much your words mean...."
@ltj61 My doctors are at Milwaukee's Aurora St Luke's Medical Center. Go cheeseheads.
I was diagnosed with a Myxofibrosarcoma in my right thigh last November. I remember how scared I was of that initial meeting with the entire Sarcoma team. One of the first things I asked was how many of my type of Sarcoma they had treated and nobody was offended. At the end, we - not just they- had a treatment plan. I had radiation and surgery.
Early on, I reached out to Imerman's Angels and have/had a wonderful one on one mentor who had gone thru pretty much the same. Please check them out if you think that would help you https://imermanangels.org/. Best Wishes.
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You need to go to a Sarcoma Center, and I just looked and they are one. https://www.froedtert.com/sarcoma So good news there!
As for questions, I would ask about what you are concerned about. One thing I learned is that I was being given so much information, and it was almost as if they expected me to know what they were talking about (I didn't). I finally just asked my radiation oncologist flat out "Can someone just tell me what's going on, cause I'm lost!", and God bless him, he replied "Alright, let's get into it" and proceeded to spend almost an hour with me just laying it all out, the good, the bad, and the ugly. It helped so much. If you feel lost, just say so. Your medical team absolutely wants to help you, but you need to tell them what help you need.