It has taken over a year to get to the point that I found two critical things: doctors I can trust, and enough information, reliable information, to make informed decision for myself.
The most important thing to say here is that you must take charge of your own care. I’m going to be blunt. There are physicians, specialists mainly, who will not provide you with the full picture and guide you to the alternatives available you so that you can make your own, well-informed decisions about what treatments are appropriate for you. Some are operating from their own agendas which may not be in your best interests.
The majority of the time between my initial diagnosis and deciding on doctors and treatment was consumed in finding relevant information then in locating and seeing an oncologist who specialized in prostate cancer (PC) and was not allied to any particular field or specialty practice. My worst experiences were with urologists. Picking up where I left off with my previous posts, the short version is this:
I went to a respected doctor, recommended by one of PCRI support people who had heard this guy talk on PC for a second opinion. When I walked into the place, I discovered it was a urology clinic. My first impulse, which I should have followed, was to immediately cancel the appointment and leave. I stayed. The urologist, who will remain unnamed here, met with me. I had taken care to ensure that all of my medical records, biopsy report, etc. had been sent to him weeks ahead of my appointment. It was immediately obvious, watching him scan through the computer in the exam room, and from the elementary questions he asked me, that he was familiar with none of the material I had provided to him before my visit.
Worse, I had been assured that I would be meeting with a team of different specialists and getting a good review from different medical perspectives. This didn’t happen, or if it did before (or after this ill-fated visit), I am not assured how it was conducted or what was actually said.
At one point, early in my visit, he told me that although he recommended treatment, I really had nothing to worry about for the next five to seven years. Plenty of time to decide what I wanted to do. Then, later, he said I should have treatment within the next six months. What treatment? His, of course. He then launched into what I can only term as a sales pitch for himself and the kind of surgery he was skilled in – old-school hands-on surgery, not this new-fangled robotic surgery. (That was the favorite of my first urologist, even though he was not old or experienced enough to have been good at it, as I later discovered. He was also a rude jerk whom I quickly fired.) This urologist then commenced to denigrate not only robotic surgery, but most other kinds of recognized treatments: radiology, hormone, bracheotherapy (seed implants), etc. He assured me he had done hundreds of hands-on surgical procedures and, for him, it was like cruise control. I would be happy, he assured me, and suffer virtually no side effects.
I left as soon as possible.
After more research and confusion, I contacted Dr. Mark Sholz in California and he agreed to see me. This was fated not to be. When my wife and I left on our trip from Colorado to California, we had serious car trouble and spent five days in Albuquerque, NM, while the car was repaired. I missed my appointment and burned through our cash and credit reserves in the process. Back to California. Further mis-adventures occurred in attempting to talk with Dr. Sholz, so we decided to find an experienced oncologist specializing in PC closer to home.
We were successful, and, strangely enough, found our man practicing now out of Albuquerque. After a few visits with him, I have begun hormone therapy and am scheduled to start external beam radiation for five weeks as a follow on. Afterwards, I will travel to Seattle for radioactive seed implants by a doctor I like and trust.
During this period, in Seattle, I had a thorough MRI to get a good look at the extent of the PC. This is a painless, though somewhat obnoxiously noise procedure and provides immensely better results and less risk than the needle biopsy.
If I have one thing to say about the needle biopsy to other men it is: don’t do it.
There are much better and more accurate assessment methods than having your prostate punctured with needles and running the risk of infection. Besides, it’s barbaric.
This is my status at the moment. I feel fine and optimistic about my future and the professionals I have finally found are good, caring and treat me like they would like to be treated as well. If your health care workers and doctors don’t treat you like that, I’d say, move on and find those that will.