On Thursday we met with a genetic counselor to discuss the P53 gene and the possibility that mine is flawed and, because of this, has made my body less able to fight off newly developing tumors. This would be a good reason for the four different types of cancer I’ve had (osteosarcoma, colon cancer, basil-cell carcinoma, and now astrocytoma). We went through my family tree with both of my parents, there parents, brothers, sisters, etc. Three generations through both families and no history of cancer except my grandma who had breast cancer at a normal age. Because of this, I was sort of breaking the mold of what a standard P53-flawed patient would look like. But in digging a bit further it was clear that I could be the starting point of a new branch in my family. We discussed having a full study done to find out more. While it’s expensive, there’s definitely value in having the results to help back us in deciding how to move forward. It takes about a month to get the results, but I’m interested in doing so. Especially if my insurance will pay for part of it… something I’ll be figuring out in the coming days.
On Friday morning we met with a neuro-oncologist. It was actually a rather brief meeting, but very helpful in understanding his preferred approach. He told us that he preferred to do additional surgery to remove part of the tumor right away, but discussed this with the surgeon who pointed out the risks of surgery. Basically, just having brain surgery carries plenty of risks, and there’s roughly a 10% chance of having significant problems (memory, motor skills, etc.). In addition, not all of the tumor can be surgically removed. Instead, only 55-60% can be. The rest of the tumor is in a part of the brain that controls speech and motor skills… something I definitely don’t want to lose. He also mentioned the genetic issues.
In summarizing our conversation, it seems the appropriate steps are to have the gene testing, and start having very detailed MRIs taken on a two-month cycle. This will allow the doctors to very closely watch for any growth of the tumor. They currently believe the tumor is either very slow-growing or not growing at all. In either case, the risks of monitoring a few months far out-weigh the risks of having an immediate surgery, so I’m comfortable with waiting for a while. So that’s what we’ll be doing for now.
I also will begin looking for a second opinion… hopefully connecting with my original Mayo Clinic oncologist who is now part of MD Anderson in Houston. I think my new doctors are fantastic, well-educated, and looking for my best options. I also think it never hurts to have a second opinion.