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Cancer Support

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Ms. Toad

(35,947 posts)
Thu Dec 3, 2020, 06:02 PM Dec 2020

Back, again. Different cancer. Update#2 - heading to surgery 12/15 AM [View all]

Last edited Mon Dec 14, 2020, 09:37 PM - Edit history (3)

I had breast cancer in 2016 - so far, so good on that front!

Now I have a new cancer - myxofibrosarcoma. I've been cooking it since 2014.

It started being diagnosed as a dermatofibroma (benign - and they don't turn in to cancer). There is a small subset of this initial diagnosis that is actually precancerous and masquerading as dermatofibromas. There are 4 general characteristics that are often associated with the (rare) cancerous version - that initial tumor had 3 of the four.

I had to fight to get it biopsied. Once biopsied (with the initial pathology report showing 2/4 characteristics) I had to fight with a different doctor to get more detailed information about the remaining characteristics - and it has one of the two remaining characteristics that are troubling.

Fortunately, after those clowns I was able to get back to my regular dermatologist. She understands that I have pretty good medical intuition. It is now on its 4th recurrence (the earlier 3 times were all diagnosed as a recurring DF, with no new troubling characteristics). This time it grew from nothing to about 1.3 cm in 5 weeks. That's not good - benign things don't usually grow that fast.

So - I just got the diagnosis. I'm in for more surgery - that's probably all for now. (They have a higher than average tendency to recur and to metastasize so it may not be the end of it.) I'm waiting to hear from plastic surgery (their expertise is required because of the extent of the surgery in pretty sparse tissue - my forearm). My prognosis is probably better than average, since I caught it early (kidney-bean sized, rather than the more typical golf-ball sized - since these things are presumed to be benign)

Sucks on top of everything else in 2020.

Am I wrong to be drafting a letter in my head to the two clowns who would have doomed me, had I not been extraordinarily aggressive as a patient? (The first one flat out told me to stop googling things. I do use google to jump start my research, but my primary source for information is the same medical journals the doctor should have been reading, but apparently wasn't.) I wish they had been right - but since they aren't, I really want to rub their noses in it.

Update:

First surgery on Tuesday (assuming we can get insurance approval for a pre-surgical MRI) to take out a big chunk of my forearm, a short-term cadaver graft, then a second surgery for an auto-graft a week later. The second surgery alllows time to make sure the margins are clean and wide enough before putting the permanent graft on.

I'll lose most of the use of my right hand (even for typing) during the 2-week healing process to keep from losing the graft - but after that life should be back to normal. (There's a potential for unexpected news from the pre-surgical MRI, or the oncologist I see between the surgeries, but those are very unlikely.)

Update #2

All clear for surgery tomorrow (12/15). MRI suggests the tumor is 2-3 times the solid tumor that was removed, but no signs of lymph node involvement or distant spread.

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