January - The Proton Centers Evaluation

I have submitted requests to be treated to three proton centers, Loma Linda, MD Anderson and the University of Florida at Jacksonville. I can only go to one. My initial thought is to go to the one with the most institutional experience. Thinking doctors come and go but institutions develop protocols, institutional experience, which set the limits of what doctors may do. Those protocols also become the facility by which experience is forced on the new doctors.

If that’s the case could I wait for the April consultation at Loma Linda or should I do something sooner? I ask doctors, web forums, an author of a book, friends and my body. Bob Marckini, author of “You Can Beat Prostate Cancer and You Don’t need Surgery”, suggested prostate cancer is slow enough growing you may be able to wait for April. The local doctors said I should make a decision within six months of diagnosis. April was five months. A friend had chosen to follow the Dean Ornish diet and was able to keep his prostate cancer in check for a few years but lately it had become more aggressive. Was I a candidate for a more aggressive version of this caner? I didn’t know but I was concerned.

My body was going through some changes. I would get more frequent burning when urinating. In October on a trip in Turkey I didn’t think I would make it to the bathroom in time. I had started to wake up more than once at night just to go to the bathroom. When I did go often time the urine flow would start and stop which didn’t use to happen. All of this is to say no matter what the source of the urination problem whether psychological of physical lent and air of urgency to start treatment.

The mind is really good at rationalizing. University of Florida and MD Anderson were two proton centers opened in 2006 within six months of each other. Both were well published (experience) and new. Newness means latest in technology doesn’t it? Much better than old? After all you don’t replace $150 million systems very frequently. I make the decision to visit all that would see me, go with the one to show the best and gives me confidence of their ability to treat.

The first to see me is the University of Florida will do a consultation at the end of January and MD Anderson will do their consultation mid-February. Loma Linda after I ask them to see if they can move up calls to say they could see me at the end of March. Hmmm…

This month also marks a change in urologist. This lady is wonderful. The initial consultation is an hour and a half of nothing but information. No DRE!! I got to trust her within a few minutes. When I met with her I told her my plans. She recommended since I was going to Florida I should stop in Sarasota to get an endorectal coil MRI using one of GE’s 3T endorectal MRI machine (I believe that’s a 3 Tesla MRI). The beauty of this machine capability sold me on spending the money for the MRI which insurance didn’t cover.

Without going into detail the information and the pictures generated by this machine is the equivalent to a biopsy of the whole pelvic area. I could actually see where the cancer was in the prostate gland. The best part was I, of all people, could see the cancer and could easily tell the cancer was contained which was confirmed by the radiologists who read the scans. I now new for sure I had cancer. No one and mixed up the original biopsy slides.

I have learned over the years when things go awry listen to what the universe is telling you. The hotel was over booked and had to go to another not as nice hotel. Yeah a minor inconvenience and can be forgotten. Got to the facility was greeted by a most wonderful incoming Nurse. I find out the doctor, Carlos Vargas, had quit starting an independent practice. The consultation went well and the procedure for treatmentwe was described . The first step is a three day work up. Which consisted of all things a further medical examination and scans to set up treatment plans, forming of a body pod to put the body in the same position for treatment and one additional surprise – another biopsy equivalent. Huh!!!

I had assumed all the centers used a balloon to locate the prostate against the pubic bone and move the rectum as far away from the proton beam as possible. Florida does not use the balloon. Instead they believe by injecting water in the rectum they had fewer rectum issues than with the balloon. To find the prostate before treatment they need to put a number of gold markers (fiducials) around the prostate. I have to go through another biopsy equivalent to place the markers. I didn’t like that idea.

Never the less I was not going to write them off yet. The three day work up was scheduled for the end of February with a treatment start around mid March. Not much difference than MD Anderson. Hmmm!! On to MD Anderson.