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Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
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HugInterested in more discussions like this? Go to the Sarcoma Support Group.
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If you want to get more details, in between appointments, you can sign into the online Patient Portal. and find out.
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1 ReactionGood point and you can message your medical team with any questions/concerns you may have. The Portal is the best for all info
synovial sarcoma - right jaw
Welcome to Connect, @rgotto41. I'd like to bring @superdave, @amd123 and @disneyrn who have experience with synovial sarcoma.
Rgotto41, we look forward to getting to know more about you. When were you diagnosed and what treatments will you have or have you had? Got any questions for us?
I had pharyngeal cancer in 2012. Surgery,chemo, and radiation. Now this new tumor in the same area and extending into my jaw. My surgery to remove the tumor seems to have gone really well. Now they suggest a 6 week followup course of radiation (proton) to boost the probability of no recurrence. I’m 78, widowed, already somewhat limited by aftereffects of the earlier treatments. I’m trying to balance the additional insurance against recurrence against the reduced quality of remaining life associated with another radiation series. It’s a guessing game I know but I’m leaning toward foregoing the radiation in favor of making the best I can of time remaining.
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1 ReactionJeff did you do a radiation series followup to your surgery? I had a synovial sarcoma in my jaw. Danial Price and Eric Moore did the surgery and reconstruction and I came out with clear margins. Radiation has been suggested as a followup for insurance and I’m debating the pros and cons. I’m 78 now.
Hi @rgotto41, I’m tagging @jeffk in this discussion so that he sees the question that you asked of him about surgery and radiation.
He has been struggling. He has lost 30 lbs since April. We just found out a new nodule has appeared where his sutures were. I’m devastated. We had to postpone chemo yesterday because his hemoglobin is low. I’m beyond destroyed over this.
My name is Kay and I had a angiosarcoma on my little finger. I had surgery and radiation. Its been 5 years. I have never talked to anyone with that kind of cancer and am interested in talking with other people who have had something similar.
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1 ReactionThe good news is that Dr. Moore was able to get extremely great margins and 100% of the tumor. Fortunately I did not have to have any radiation. This was three years ago and I know that perspective on radiation has evolved. I would have a serious conversation with Dr. Moore about the benefits and potential concerns. As you most likely know he is very approachable and will engage in a healthy dialogue. Good luck to you!