On Friday I went back to the gynecologist oncologist to fill him in on the latest recommendations I had received. He was rather disappointed that radiation was the recommendation. He was in support of using Gleevec.
We spent the next 30 minutes discussing why he prefers this method (less chance for damage to surrounding tissues, no effect on my ovaries, etc.) He was in support of me seeing the medical oncologist at MDAnderson in person instead of just letting my doctor ask the questions in a fax.
He asked if they had done any estrogen/progesterone receptor testing on my tissues. I called them today and they have not so I put in a request for that. The reasoning is that if it comes out relatively negative or even just low for ER/PR then if I do end up doing radiation, I can be treated with low doses of estrogen should I need it to cope with menopause symptoms.
I have an appointment set with the leading medical oncologist for desmoids at MDA, Dr. Robert Benjamin, for September 4. I will follow that up with another final appointment with Dr. Pollock the following morning. So another trip to Houston.
The good news is that after this appointment, I am putting all of it on the back burner until I have my next MRI in December.