December decision

I’m in the middle of it. I get confused, clear, frustrated, confused clear. Finally like a week of gray clouds the sun start to peak through as a decision coalesces. There is just no one answer. Every solution has its detractor and supporters. Doctors are not much help.

Prostate cancer grows from cells inside the prostate and start replicating. Some replication occurs spontaneously at other sites within the prostate. The concern, as in all cancers, is to treat prostate cancer before it escapes the organ and metastasize. A surgeon would like to make sure he not only removes the prostate carrying the cancer but any additional cells which may have escaped the prostate. A radiologist would like to treat the prostate with radiation and a margin around the prostate for the same reason.

I spoke with a very talented surgeon at the University of Colorado Medical center who gave me the choice of having him remove my prostate with either the robotic Da Vinci method or conventional surgery. As part of his disclaimer he discussed he would do his best to remove all of the potential cancer escapes but to be sure I may want to consider at some point down the road radiation of the surrounding tissue. Huh! If that’s the case why mess with surgery. Do radiation.

I interviewed doctors of every field, a number of surgeons including cryosurgery, radiologist – beam, Brachytherapy, High radiation implants. I changed urologist and found one I trusted who also happened to offer HIFU as a therapy. I got to the point where I understood the weakness and the brilliance of each approach. Each practice is a means to kill the offending gland either by removing it, freezing it, grilling it (HIFU) or nuking it with radiation. When a practicing urologist at the University of Colorado after a long interview said “…within ten years we will no longer slice and dice and then went on to say “I no longer do radical prostatectomy” and saw the side effects of surgeries I lost interest. HIFU looked promising until a doctor stated 80% of the men do great but 20% do terrible. I lost interest. Radiation looked promising but which one?

To winnow it down further I started talking to those who have gone before me. Email and phone were now busy. I requested information from many treatment centers. I contacted friends who knew someone who had been treated for prostate cancer. I found list of people who made themselves available to help us newbies as well as prostate support forums.

The forums are interesting if you understand them. People who write to the medical forums write to them because they have a problem. Either they need to find out the best way to cure themselves or to solve a serious problem with a side effect. The result is you get to see the worst issues with a procedure, the solutions to deal with the side effect, and the rationale to use a treatment from the optimist or those successfully treated.

What I wanted from this exercise was not a statistical analysis of the problems but to know what were the most problematic problems people had. In another word if I was unfortunate enough to fall into the 1% who did have an issue what was it and how was it dealt with? In the end it was very rare to find one person who had conventional radiation or surgery to come away from the experience with glowing praises. However there was one radiation group which had universal praise for their treatment, those who received proton radiation –now my choice. It was a surprise since not one doctor recommended it.

Proton therapy came out of work done at Fermi Lab in 1946 and Harvard University to turn it into a cancer treatment. Loma Linda hospital, one the USA premier teaching hospital, has provided proton therapy since the early 1990s. I contacted them to find out if I qualified for treatment. The good news was I did but the earliest entry for treatment would be April (I applied in December). Needless to say I wasted no time in sending in my medical information. I received a consultation date of April 7. Wow four months to a possible treatment could I wait that long?

Not being sure I had the time but becoming convinced proton therapy was correct choice. I wanted to find another center to treat me. The second oldest was Boston Mass. I sent them a request but only heard back a couple of weeks later. According to US News and Report the best cancer hospital in the US is MD Anderson. They had a proton center which had come on line I sent them a request. The result was a month earlier than Loma Linda. I also signed up with them.

It is amazing where you find information. Apples ITunes had a medical section which even had an oncologist symposium held in Los Angeles last October (2007) with a portion devoted to proton therapy. It was technical in nature which I loved. It was hosted by the head of the University of Florida proton center. So I sent them an application. I was accepted for an initial consultation in January with treatment start in mid to late February.
Proton was clearly what I was interested in. It offered low side effects during treatment very low percentage of incontinence but a 30% chance of impotence. Treatments lasted 9 weeks which I assumed was equivalent to the recovery period of all other treatments. Although the impotence numbers were higher I had yet to talk to someone who had issues which could not be accommodated with the blue pill.

Worth the risk! So which proton center to chose?