Appointment w/ Dr. Wolff

Posted by Casey on January 17th, 2007


We arrived in Houston yesterday afternoon. The city was in crisis mode, as the weather was in the 30s, which is just not acceptable to Texans. There were ice warnings galore, and non-stop news breaks with more and more warnings of impending doom. I got a kick out of it.

Anyway, just a few blocks before our hotel we passed MD Anderson, and I was immediately amazed by the size of the place. The cancer center alone is larger than the entire clinic I’ve been treated at in Minneapolis. The grounds are beautiful.

Today we woke up for my registration. It was supposed to begin at 8:00, but as I said, we were under ice storm warnings, so entire departments didn’t make it into work right away… including the business center that needed to register me. :) After waiting a bit, we got set up in the computer and I was soon greeted by Dr. Wolff. And after only a few minutes of talking to him I felt certain that I was in the right place. He asked me to walk him through my history. I told him about the colon cancer, the osteosarcoma in my hip, the return of the osteosarcoma in my heel, the amputation, more osteosarcoma in my jaw, the skin cancer on my neck, and now the cancer in my brain. With each passing chapter he was reactive, and I think he was in some ways shocked. He made comments along the way, we laughed at some of the things I had gone through. But all the while, I could almost see his brain chugging through all of this, thinking of ideas and ways to move forward.

When the interview portion was done I was given a physical. Just routine stuff, with additional questions along the way… about my curved spine, about my scars, about any possible new side effects I had as a result of the tumor in regards to hearing, sight, etc.

He then went through his thoughts on treatment options and best next steps. And he started by confirming that he, at least initially, believes it is smartest for me to just continue having MRIs to monitor for growth of the tumor. But he helped me to better understand why.

The size and location of my tumor don’t allow for a simple surgery. The fact that it’s in my brain alone means very high risks. I could end up paralyzed, even with successful removal of the tumor. He discussed how larger centers like MD Anderson have more expert surgeons that aren’t just “brain surgeons” but even more specific to parts of the brain, or tumor-specific specialists. They’re just that much more detailed in their area of focus. This made me realize how important it is to go to a major center if I have to have surgery.

He also discussed radiation treatment and how important it is to minimize risk of affecting other areas of my head/brain by finding the most precise treatment possible. If I truly have a genetic defect (and Dr. Wolff feels I do), then it’s even more important that the radiation spread as little as possible beyond the tumor, to minimize the risk of this just causing additional tumors. He discussed the different types of gamma radiation that exist for cancer treatment. Most commonly, the treatment uses photon rays. MD Anderson, and only two other clinics in the United States (in Boston and California) offer a newer form of treatment that uses proton rays. And again I right away felt like I was in the right place, and should I need to have radiation, I would choose to do it at MD Anderson.

We quickly covered chemotherapy. Dr. Wolff feels that given my previous experience with chemotherapy, and the awful side effects I had, that it wouldn’t be high on the list of treatment recommendations.

This all made me further question why I wouldn’t immediately go through treatment to remove the tumor. So I questioned Dr. Wolff. And he reminded me of the fact that I have such a high quality of life right now. I’m able to work, I have very few side effects of the tumor… no physical ones, and only minor seizures now that I’m on medication. And that having surgery or radiation would rob me of that quality of life. And beyond that, it would raise the risks of the major side effects that could come along with it, especially surgery. I could end up with sever motor skill problems, or even be paralyzed. So why take the risks when there are no side effects that demand it? It started to all make sense.

He suggested a few additional appointments that I have while I’m here, including some tests like blood work and an MRI of my spine to confirm that there’s no related issues there. I’ll also likely be meeting with a radiologist to discuss treatment options further. More to come on that.

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