No posts in quite a while, I know. The good news was a false alarm and we've been dealing with the misdiagnosis. I was very relieved and happy to hold on to "it isn't cancer" pronouncement but I'm not stupid. I knew that we needed a definite answer to what it actually was. We headed to a very good general surgeon. So good that the tests she ordered were much more accurate than the CT scan Gregory previously had. It wasn't conclusive but the MRI showed it wasn't just a sebaceous cyst. She sent us to an excellent oncological surgeon. Long story short he was headed to surgery. I won't go into the quantity and levels of meltdown which occurred due to tests and other stresses, but it was significant. And not just Gregory.
After surgery, the labs came back showing it to be aggressive fibromatosis (also called a desmoid tumor). While not a traditional sarcoma, it 1) can kill you, 2) can come back, and 3) does respond to chemo and radiation in some cases. The trick is to get it out with a wide, clean margin around the tumor. For more information on this see Treatment of Soft Tissue Sarcomas at the American Cancer Society webpage. Fortunately our surgeon did get clean margins. We were to return after surgery to check the incision and then every three months after that to watch for recurrence.
Our first three month visit didn't go well. Something had started growing. So our doctor had us come back in a month. That appointment was Friday. The new mass shrank from the previous month but is now more painful. There is a very good possibility it is epidural fibrosis (a bundle of nerves getting pinched by scar tissue and fibrous adhesions). The surgery to remove this is significantly less invasive. Gregory has requested a general anesthetic to avoid meltdowns during the procedure. Mom concurs. The doctor's office will call us in the next week or so to schedule things. I'll post when more information is available.
After surgery, the labs came back showing it to be aggressive fibromatosis (also called a desmoid tumor). While not a traditional sarcoma, it 1) can kill you, 2) can come back, and 3) does respond to chemo and radiation in some cases. The trick is to get it out with a wide, clean margin around the tumor. For more information on this see Treatment of Soft Tissue Sarcomas at the American Cancer Society webpage. Fortunately our surgeon did get clean margins. We were to return after surgery to check the incision and then every three months after that to watch for recurrence.
Our first three month visit didn't go well. Something had started growing. So our doctor had us come back in a month. That appointment was Friday. The new mass shrank from the previous month but is now more painful. There is a very good possibility it is epidural fibrosis (a bundle of nerves getting pinched by scar tissue and fibrous adhesions). The surgery to remove this is significantly less invasive. Gregory has requested a general anesthetic to avoid meltdowns during the procedure. Mom concurs. The doctor's office will call us in the next week or so to schedule things. I'll post when more information is available.
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