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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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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 ReactionWelcome 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?
synovial sarcoma - right jaw
Good point and you can message your medical team with any questions/concerns you may have. The Portal is the best for all info
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 ReactionAbout four years ago they found a soft tissue sarcoma next to my tummy. I underwent radiation treatment and surgery. The tumor was dead when it was removed. Then a short time after I went to Mayo,Jacksonville and Dr Attia. He found stage 4 cancer in my lungs and upper right leg. After six hellish bouts of chemo and surgery I have been cancer free. But I am on a maintenance chemo every 6-8 weeks. FYI........... I have never asked the medical term for my sarcoma
Hi Jeff, I sent you a message through the portal here. : )
When my laryngeal chondrosarcoma (less than 200 cases ever) was diagnosed the first opinion I received from one of the top 10 surgeons in this area was that I may end up with a permanent trach and maybe a feeding tube. I ended up visiting 5 other surgeons and Mayo was the only place that provided me with hope that they could remove all the cancer and maintain the majority of functionality. I strongly advise you to seek additional opinions and Mayo should be at the top of that list.
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3 ReactionsHello @raeangel319. FS variant here to. If it is Mayo Minnesota you are looking at, Dr Randall Roenigk is a bit of a legend among dfsp’ers. Not sure how many fs subtype he has treated, but he has performed successful Mohs on patients others have refused. For FS variant, the follow up is equally as important as the surgery itself. The FS variant has a very real increase in the risk of mets. Lifelong follow up and regular scans should comprise part of the approach to post operative care. Wish you well and keep posting about your progress.
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2 ReactionsI had it biopsied April 30. (Is that what they go by for official diagnosis date?)
It's on the side of my breast, but I was assured it's not breast cancer. That it was not in the breast tissue.
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