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Synovial spindle cell sarcoma, left lung. Anyone else have this?

Sarcoma | Last Active: Aug 10 7:25pm | Replies (17)
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@mir123

Thanks Colleen for connecting me. @jrs2024--this must certainly have come as a shock. I have a NET in the breast, so can't speak specifically to your situation. But with a very rare cancer I can just check in and send you my best. I found the uncertainty to be difficult--and still do. That is, no real studies or protocols. I'm glad your hospital is partnered with Mayo (as was my oncologist). Do you have any idea if you will have additional treatment?

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Replies to "Thanks Colleen for connecting me. @jrs2024--this must certainly have come as a shock. I have a..."
jrs2024 | @jrs2024 | Jun 18 3:33pm

Thanks for the contact and sharing your diagnosis. Beyond the breast surgery, I may have to have a lesion removed in my colon. Just had colonoscopy and endoscopy yesterday and will take 7-10 days to get results of biopsy. Yes, the lack of knowledge and experience by medical professionals with this type of cancer is scary. My second oncologist has at least treated it in the past in at least one woman. Until all preliminary tests are reported, I can’t have any surgery nor will I know for sure about additional treatment. With just the small .5 or .7 cm breast tumor, the oncologist didn’t think I could need anything else. However, with potential second cancer, I don’t know yet. It’s been 6 weeks since I got first biopsy results and I’ve learned as much as I can about this very rare cancer. In the 80 and 90’s it was mostly in HIV positive males. Mine is not sexually transmitted and they have no idea how I may have contracted virus. Mostly found in Eastern Europeans or Jewish males at younger ages. I fit none of profile characteristics. Have had skin biopsies, CT full body scans, multiple blood tests, full genetic testing and fortunately every other soft tissue area has been negative with no identification of cancer in body scans. However, very concerned about colon biopsy although only about 20% of these lesions are cancerous.
Oncologist says most likely will not die of this but could have recurrence and additional treatments as it is treatable but not curable.

What is NET breast cancer and how have you received treatment?

Article in Washington Post on Sunday, June 9 told of group of oncologists in SC who are exploring connection between having had Covid virus and very rare cancers, particularly in older adults. I had 4 Covid shots and boosters but still had a mild but different case of Covid in 2022.

I’m learning everything I can as it only knowledge power that I have. There are lots of articles in National Medical Library and Up to Date(a subscription medical journal I joined for 2 months use). Both have been helpful for a little understood and very rare sarcoma.

Thank you for reaching out. It you have further information sources or any additional treatment information, please let me know. Jrs

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