Voices from the Prostate Underground

How the Journey Began There isn’t any good way to learn that you have cancer. In my case, the day already wasn’t going so well. Our new puppy had broken its toe, was in a cast and driving the household crazy. It was like Tiny Tim on steroids; a cute little peg-leg creature clumping around the hardwood floors, tearing up shoes, newspapers and anything else within reach. Then the doctor called. The results of my recent physical exam were in. “Your PSA score is high. That measures your Prostate Specific Antigen,” he said. He seemed to have ruled out an enlarged prostate or infection, so that left one other choice. “I need you to come into the office. I need to do a biopsy to check for cancer,” he said. The mind went numb at the c-word. I thanked the doctor even as he continued to talk, and hung up the phone. My wife entered the room as the phone rang again. This time she picked it up. She listened for a few minutes and I distantly heard her say, “Thank you, Doctor. We’ll see you at your office next week. No, I’m sure he didn’t mean to hang up on you like that. Goodbye.” My wife handled the news with a lot of cool. However, cool was not a factor for me. I felt cold, numb, and it was a sensation that endures. This sort of scenario is played out nearly 200,000 times a year. Around 30,000 men die from prostate cancer each year. Even so, the issues and facts related to prostate cancer are not front-page news, and sometimes are hard to find. This, in spite of the fact that prostate cancer has a high cure rate when caught early. Jim Keifert, a seventeen-year cancer survivor and active in Us TOO, an international men’s prostate cancer support group, summed it up by saying, “Prostate cancer is perceived as something that attacks a man’s masculinity. Guys don’t like to talk about it, so the message doesn’t get out.” When my own urologist completed my biopsy and confirmed that I did in fact have cancer, the next words out of his mouth were, “Let’s get you scheduled for surgery.” When you are diagnosed with cancer, you become very vulnerable. You feel like your body is out of control. What you want most is for someone to just make it go away. I was only too happy to agree to the surgery. Shortly after that, a good friend called and said, “Don’t agree to surgery until you talk to my friend. He went through what you’re going through and had a great treatment that doesn’t have the side effects of surgery.” Five minutes later his friend called me from back east. During our conversation, he advised me of a key point that my urologist left out of our earlier discussion: There were at least five types of treatment available to me. Surgery wasn’t the only option. All had about the same chance for a cure. I called my urologist and asked about one of those treatments, called Proton Therapy. During some quick research, I discovered that the treatment has been used effectively for over 14,000 patients at one facility. “It’s a gimmick,” he said. “The best answer for you is cold hard steel.” Those were his exact words, and they just didn’t sit right with me. It was enough to motivate me to research further. Jim Keifert summed up the situation by saying, “Surgeons know surgery. Your urologist has confidence in his skill as a surgeon, so he recommended that. A radiation oncologist might recommend radiation therapy, since that’s what he or she is most familiar with. Each approach may well work. The bottom line is that it’s up to you to select the best treatment for your situation.” For the next four weeks, I researched prostate cancer treatment. I talked with two radiation oncologists, two urologists, a host of other healthcare professionals, and visited countless websites on the Internet. The upshot of that effort was that, given my type and severity of cancer, I did indeed have five or more treatment options. The good news was that each form of treatment promised approximately the same level of success, even though the side effects varied. As one particularly enlightened urologist said, “The good news is that you have five choices for treatment. The bad news is you have five choices for treatment. Now, I had to make a choice. We men are our own worst enemies when it comes to prostate cancer. We simply don’t talk about it, because of the perceived threat to our masculinity. The information is actually fairly abundant, but exists within a close knit group of survivors and enlightened physicians, a sort of Prostate Underground who help other men with their prostate cancer, while not making it too public.