r/sarcoma • u/saultee8420 Chondrosarcoma • 7d ago
Should I get radiation on my amputated toe area?
I had my toe amputated 20 days ago to remove a tumor of extraskeletal myxoid chondrosarcoma and the pathology report showed negative margins but they were thin. The pathology report says Distance from Tumor to Closest Margin: 0.1 cm. I saw my radiologist today and he gave me the option of doing radiation. It would be 30 sessions over 6 weeks. He also said there is a chance of major side effects that would end up having me do surgery again. I asked him the percentage odds and he said he would estimate a 10% chance of side effects severe enough that would lead to surgery again. There is a chance that there is still microscopic amounts of cancer left in my foot so I'm not sure what I should do.
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u/jay-aay-ess-ohh-enn 7d ago
This paper might be worthwhile for you to read:
The role of radiotherapy in the management of localized soft tissue sarcomas
You will want to read the Can RT be avoided section carefully and try to also read the cited references.
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u/kuczwanski Synovial 1d ago
I had synovial sarcoma wrapped around the tendons to my big toe. I only lost the tendons, not the toe. I did not have clear margins so radiation was recommended by my medical oncologist. I followed the radiation doctors suggestions to keep it well most moisturized and I was off my foot anyway so it was easy to keep it well moisturized and wrapped. I didn't have any problems with the radiation. It did leave me with a little permanent tan, and while I was getting it the surgical incision reopened, but not enough to cause any problems. Hope this helps and I wish you the best with yours.
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u/kuczwanski Synovial 1d ago edited 18h ago
The article the next person posted reminded me that I do have some persistent edema in my bone marrow in my metatarsal heads caused by the radiation. I have had two months of physical therapy and it has restored my foot more than I ever imagined possible. I believe that the bone marrow edema did cause some swelling in the bones, according to my medical oncologist. But I can see that the swelling has been reduced considerably over the two months with physical therapy. Again I hope this helps. I don't know much, just a 72-year-old patient here, but physical therapy has made a new woman of me. I can now hop and run. I don't know what would be possible without the toe, but I'm hoping it's more than you would expect.
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u/timewilltell2347 Leiomyosarcoma 7d ago
It’s definitely something to consider. I have a different sarcoma (leiomyosarcoma) but most sarcomas are sneaky and persistent. Being stage IV and knowing what I know now, I really wish I had been given the option of ‘clean up’ chemo or radiation after my first surgery when the cancer was contained. I wasn’t offered it. They kept saying ‘pretty much cured’ and ‘good clear margins’. I listened to that. But you’re also talking to a doc whose specialized modality is radiation. Talk to a medical oncologist too. Get as many options as you can. What kind of radiation? Is SBRT an option? It is a stronger but shorter duration of treatment. You have the % risk, but what are the chances for the good outcomes.
It’s all a lot to consider, but I definitely would spend some time considering doing something if that fits with how you see your body and your treatment. Just also consider sarcomas are aggressive and complex. That’s why the first suggestion to the newly diagnosed here is to find a sarcoma specialist or sarcoma center of excellence. I wish you well and hope you’ve recovered from the surgery well. Toes are small but I know it can affect walking and balance a lot for some.