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by HappyH on Sat Jun 30, 2018 03:16 PM

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I found out I had this rare cancer on March 26, 2018 after extensive testing all ordered by my oncoligist sergeon. My ordeal started on Jan 18th when I discovered a ping-pong ball sized lump on my upper right arm and was sent to him to have it removed. He said if it was benign it would be a "piece of cake to remove. Not so if it's malignant." After an ultrasound biopsy our very good lab in Bangor, Me identified it as malignant, but couldn't say what kind of cancer it was. So the speciman was sent to Dana Farbur in Boston. I got a call from my sergeon letting me know it was malignant and that I was going to have radiation and chemo to shrink it before taking it out, but he didn't tell me anything else. This of course frightened me as did the full PET/CT scan with contrast ordered by him. I mean full; from head to toe. I have since learned from experience that this guy is very thorough and I'm glad for that.

On March 26th I met with the Radation Doctor, who walked in and said, "You have Myxofibrosarcoma and it's curable." Needless to say that was a great relief. One always assumes cancer is treatable or terminal. So the prognosis is good.

I've been through 5 weeks of radiation and dodged the bullet on chemo, becasue Dana Farber decided the tumer was too small to warrent it. Eastern Maine Medical Center Cancer Care is affiliated with them and I'm really getting the best treatment around.

The tumor is to be removed on July 3, 2018, three days from now and I'm hoping for the best. My worry is I will loose  so much muscle my right hand won't work properly or the nerves will be damaged. The tumor is also close to the artery.

I'd like to know how others did in similar situtations.

I will post again when all is done.

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