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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 5 days ago | Replies (845)Comment receiving replies
I am diagnosed with pleomorphic sarcoma on my scalp, which I understand to be very rare. I have my initial meeting with my oncologist today and don’t yet know the stage or grade. She is a board certified surgical oncologist. Because of the location, should I seek a specialized treatment facility.
Replies to "I am diagnosed with pleomorphic sarcoma on my scalp, which I understand to be very rare...."
I was diagnosed in 2017 with Pleomorphic Liposarcoma. As with your case, it is very rare and it took 5 weeks to even get the diagnosis. There are not a lot of studies, because of its rarity, so protocols for treatment seemed to be a bit of a shot in the dark. Surgery removed the sarcoma from my back and after 10 weeks of wound healing, radiation and chemo followed. I started followups with Blood work, MRI’s and CT scans every three months. I am now to the point of doing my followups yearly. This is an adjustment for me as I have found security in those followups. So far I have been very fortunate as there has been no reoccurrence to date. It sounds as if your direction is similar.
Trust the process and your Mayo team. They ARE the best.
Best wishes going forward, one day at a time.
@wandrew, how did the meeting go with the surgical oncologist? Are you considering a second opinion? What's the treatment plan?
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Good Luck and good you have it diagnosed correctly - my Dad had a skin tag removed from his back which has turned out to be pleomorphic sarcoma. Make sure you request chest x Ray/CT to ensure no spread. We were told these were very rare too and not a lot of research on treatment options (I’m sure yours will be surgically removed if on scalp but Dads is now in lungs).