What's Next: Proton Beam Radiation

Ever since the discovery of the tumor, I've known radiation was on the horizon, but I held onto the hope that I'd never have to do it. It was unsettling to think I would ever need radiation because I associate radiation treatment with cancer - most people do. My residual tumor is benign but not operable, so I have two options: wait and observe or proceed to radiation. Waiting is a gamble and most likely not a wise choice because of the aggressive behavior of my tumor. Although it is not cancerous, the threat of damage to critical structures of my brain is real.

I met with a neurosurgeon at MD Anderson Cancer Center for another opinion regarding the location of residual tumor in my skull base and radiation options. The doctor agrees with the oncologist and my neurosurgeon in California regarding the distance of tumor to critical structures. He did not recommend Gamma Knife or 5 day radiosurgery and said that 6 weeks of radiotherapy was the safest plan. I asked about Proton Beam Radiotherapy vs. Fractionated Stereotactic Radiotherapy, and he thought I was a good candidate for Proton. Shortly after the consult, I decided to move forward with radiation treatment in Houston. They wasted no time in petitioning my insurance company for coverage. My insurance initially denied the request but then overturned it when my oncologist called and gave more detail regarding my case. I am relieved and grateful for the oncologist's efforts because I didn't want to go through a drawn-out appellate process.

I will proceed with radiation once a treatment plan is complete and agreed upon by all the doctors. After treatment, I will be monitored closely for hormone failure since my pituitary gland is in the field of radiation. I've been told that I will experience some hair loss and fatigue, but other than this, life goes on as usual. I'll document my experience along the way, but updates on my health blog will be delayed. It is hard to know on this side of radiation if things will go smoothly, but I'm content with my decision and anticipate a good outcome for the most part.