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Myxofibrosarcoma: What treatments did you have?
Sarcoma | Last Active: Oct 7 12:35pm | Replies (104)Comment receiving replies
I was just told I have myxofibrosarcoma and I’ve never been so scared in my life. I have a tumor the size of a golf ball on my right foot right next to my ankle and I’ve been told that’s an uncommon place to have it. It took awhile for the diagnosis and several docs thought it was “just a ganglion cyst” that could easily be removed. I need to wait 4 more days for a full body PET scan and then I meet with 2 oncologists (radiation and medical). I would very much appreciate some advice to help me with my emotional state of not knowing and of course thinking the worst. I know that’s not productive and I need to take one step at a time. Still in shock and aside from being scared shitless, angry beyond words…thank you
Replies to "I was just told I have myxofibrosarcoma and I’ve never been so scared in my life...."
Welcome to the shittiest of clubs! I remember that anxiety, stress, and anger so very well. While I don't know anything about your specific situation, I can share what I went through so far. While it's certainly been a challenge, with many hurdles, for me personally the actual experience wasn't nearly as bad as I imagined. I got diagnosed with a high grade sarcoma in my thigh, Thanksgiving 2022. Surgery February 2024, followed by radiation, physical therapy, etc. My last scans have all been clean, and overall I'm doing pretty well. Even went kayaking over Memorial day weekend. I'm only sharing this so you know that it's not all doom and gloom. Ignore the statistics, because you are not one.
The best advice I have is to process the information as it comes, not as you imagine it. In other words, deal with today's problems, and not the future unknowns. What you imagine may be worse than the reality, or may not even happen at all. You already have plenty of real world worries, no point in adding new ones. Don't get too high on good news, and don't get too low on setbacks. Deal with each day as it comes. Feel free to message me if you have questions. While every treatment plan is different, there are commonalities.
Hi! Just wanted to reach out and say hi. I just joined this group but we are on similar timelines (I got diagnosed late april and just completed radiation and surgery to remove a myxofibrosarcoma tumor on my thigh (also spent about 2 yrs having it misdiagnosed as a cyst). Happy to connect more if you want to share treatment experiences or just vent. Hope you are letting yourself feel whatever you need to feel and taking things one day at a time!
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Welcome, @ljt61. I can imagine that you are frightened. But you are not alone. I'm tagging fellow members like @4me @liv38556 @jonezzi @marshelle @chuck138 @michellebanta @lgshoaf @enver @thompta who have experience with myxofibrosarcoma.
This is all so new for you @ljt61 and like you said you're still in a state of shock and on an emotional rollercoaster. Waiting is the hardest part. I bet you have a lot of thoughts and questions whirling about in your head as you wait for your appointments with the radiation and medical oncology.
Have you started making a list of questions? Not sure even what to ask?