Just thought I'd post what's going on with my husband in case someone finds it helpful.
We went to MD Anderson, and our experience there was entirely different from the local oncologist and even from the melanoma specialist at UT Southwestern.
The docs at MDA have current patients who have been living 5+ years with anal/rectal melanoma. They have operated on 18 cases so far this year, and they were seeing two follow-up patients the same day were were there. We definitely felt we were in much better hands. They had a clear treatment plans, including plans for the various contingencies.
Since the PET/CT was inconclusive as to whether there was residual cancer, the surgeon did an exam under anethesia and found that there was in fact tumor present. Due to the location of the tumor, it can not be removed without compromising bowel function.
So, the plan is to use chemotherapy plus immunotherapy to shrink the tumor and then remove it. Apparently mucosal melanoma does respond to chemo, unlike cutaneous melanoma. They are using a combination of 3 chemo drugs and Keytruda. Keytruda was initially denied by our insurance, but a phone call from the doctor got the denial overturned.
There will be 2 round of chemo, 3 weeks apart. Each round will consist of 4-hour infusions 4 days in a row.
3 weeks after the second round, the surgeon will do another exam to determine if the tumor has shrunk enough. He says 2 rounds is almost always enough in his experience. Then there will be an MRI of the pelvis to help determine the specific plan of surgery. Surgery will include removing the tumor plus as much margin as possible, as well as removing the sentinel lymph node and possibly additional lympth nodes.
After surgery, there will be radiation and then a year of Keytruda. If Keytruda doesn't work or stops working, there will be testing for c-Kit mutation (the tumor has already tested BRAF negative).
I hope this info will be helpful to someone at some point.
(Background: my husband initially had surgery to remove what was supposed to be an anal polyp, but turned out to be 3 melanoma tumors. The surgeon — who was understandably not expecting melanoma — removed all the tumor that he could see but was not able to get any kind of margin. Local oncologist ordered PET/CT which showed activity that could be residual cancer or perhaps just post-surgical inflammation. He recommended going back to the orginal surgeon to "take out whatever else looks like cancer." What??? Melanoma specialist at UTSW recommended against that, of course. There is a surgeon at UTSW who has some experience with this type of tumor, but we decided to go with the even more experienced docs at MDA.)
.
