I guess that rule no. 1 of the experienced cancer patient is what has almost become a cliche for us: " Be your own advocate ". I, like most of us, was a little awed at first by the fact that I was at MD Anderson, rated the number one or two, depending on whose poll you read, best cancer hospital in the U.S. ( and, I guess the world ). I chose not to go to go to another facility for a second opinion, and, as I watch people from all over the U.S. and the world travel to Houston to be treated at MD Anderson, I still believe that I am being treated at the right place.

Having said that, I have learned that I must be my own advocate. Having an interdisciplinary team is a wonderful way to be treated for the cancer, but at times I have felt lost between the surgeon, radiation onc. and oncologist. Seven months late, I finally met my patient advocate, but as far as I can tell, she is worthless.

At present, I am trying to figure out why I am feeling less energetic, making less progress eating, and for the first time since getting better after treatment, feeling worse. My chest Xray showed " aspiration pneumonia " and after a swallow study showed no aspiration, the swallow tech assumed that it is reflux and prescribed Nexium for me. I am not satisfied with this, so I have been emailing my doctors, and even paged a couple of them to further discuss the matter.

I am scheduled to see the swallow people again on Tuesday, 4/29 and now, after paging him, will see the surgeon again as well. I have never had the need for surgery, but for better or worse, this fellow is my main care giver. But he doesn't have a care giver's personality...he has the arrogant personality of the renowned surgeon that he has been reputed to be for over 25 years.

My point: Don't be intimidated. Ask questions. Take a loved one with you to remember and write down what was said and to ask their own questions. Get business cards from every doctor and assistant..most have email addresses and pager numbers. And, as Brian said, if you don't feel right or you feel that something is wrong...pursue it. I am very fortunate to have physicians for close friends who constantly answer questions for me and attempt to steer me in the right direction...but all of us can demand a little time and ask questions...the doctors are obligated to answer them.

Don't be shy...it's your life. ( and my kids want me around a while longer)

Danny G.

Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.