Part 3 of six posts today about proton beam therapy. To start from the top, click here.
Rick Plummer of Florida on the "stonewalling effect" from urologists
...I was not informed about proton therapy by my urologist, like many of these men, and found it on my own through diligent research on the internet. When I asked him about the option I was told "Oh no! Don't go there. They will burn you up!" There was a unifying theme to the stories I was told by men in treatment at [University of Florida]. Almost all of us had to overcome this "stonewalling effect" or discouragement by the doctors and were left to our own devices to come to a decision about which treatment option to take. We were universally happy with our treatment at the Proton Institute and felt bonded as if we were soldiers in a battle unit. Often that meant we had gone up against a common enemy and prevailed. Not Cancer, but our Urologist!
Many comments mentioned that doctors, especially urologists, don't seem interested in sharing information about proton beam therapy with prostate cancer patients. It's difficult to know whether this is happening broadly and, if so, why. However, after interviewing dozens of specialists, I would guess that doctors who do this are doing so for one, or some combination, of the following three reasons:
1) They simply don't have much knowledge of proton beam therapy, so they don't feel comfortable discussing it with their patients.
2) They know about proton beam therapy but also know it is a scarce resource that is especially beneficial for children and people with certain rare types of tumors (eye, head, and spinal) for which fewer alternative treatments exist. To save spaces for those patients, some radiation oncologists may be more apt to direct men with prostate cancer toward more readily available conventional radiation.
3) They believe very strongly in the usefulness of their own specialty, so don't refer people elsewhere. Of course, there's also a financial disincentive to refer people to protons, but I guess we can only hope that the number of doctors influenced by it is very small.