The Depression Group

Yesterday I drove for an hour to attend a prostate cancer support group. Once I found the place, I couldn't find the group meeting place. Each room I was referred to was vacant. I then saw five men sitting around a table in an open area and walked over. Yes, this was the place. They had decided to move, but had not left a notice of that anywhere. Not an auspicious beginning. It soon got worse.

I had to tell my story, of course, but I didn't get all that far before the group, exclusive of the leader who seemed to be up on the topic and very open minded but had to leave to attend to business, took over. The basic story was that each of the four men there had already undergone some form of treatment, and, as far as I could tell, were not thrilled with the outcome. Some talked as if they were "cured" while others worried about remission. All complained about some undesirable side effect. Incontinence was barely mentioned but alluded to of course. The focus of discussion quickly moved to the need to make a decision on treatment and get on with it. Just the opposite of my belief.

I mentioned that one good thing about waiting on any kind of treatment is the likelihood of new and better options as medicine learns more about PC. While most of the men agreed that this was true, they didn't want to linger here. Their main focus was telling stories about their treatments, their doctors, and a little about side effects. There was much discussion along the lines of "what's your PSA? What's your gleason?" Sort of like, "what's your sign."

However, running through the conversations was the fact that all of them had been rushed into a treatment decision by their doctors. One man recommended that I go to a local doctor who was an "expert" in PC. I knew of this doctor. He is a radiation oncologist, and guess what, he favors early treatment with radiation. There was also a recommendation to see this robotic surgeon. "He's really good." There was discussion about needing both seed implants and general radiation together. Some gruesome tales of treatments of various kind. Only one of the group mentioned that he wished he had waited before jumping into treatments.

I also learned that one of the urologists I had been referred to is the guy who slammed one of the group with a 6-month effective hormone shot very soon after his diagnosis. Looking back, the patient wished he had taken the time to understand his condition and options, and the possible side effects of various treatments. He would not have acted so swiftly.

In the end, these men validated what I have been learning. Most doctors will treat PC, regardless of it's severity, as something that needs treatment rather quickly. Their recommended course is whatever their specialty happens to be, naturally. Regardless of the fact that men with high risk factors are no more likely to die within ten years than are men with low risk factors. And, the likelihood is around 5%.

In addition to all this, little discussion was made of the risks of these radical treatments, especially surgery, on older men. One of the guys suffered a severe infection resulting from a biopsy, but this didn't raise any red flags. Probably because, other than him, the rest had escaped serious consequences, or didn't talk about them.

So, rather than support, I felt depressed. I need a group of men who are more understanding of PC and modern thinking on the subject and some who are refuseniks like me who prefer to keep their quality of life and wait.

I know this sounds harsh, but the general impression I left with is that these men are afraid to die. Now, I am fearful as well, but I also know that dying is the natural end of life and the manner in which we choose to live, and to die, matters. Undergoing long and difficult treatment processes, with life-altering after effects that seriously degrade those few years left does not seem worth it to me. If I was not seventy years old, I might think otherwise.

One of the men, the least educated of the group, but probably the most perceptive, said something to the effect that it really doesn't matter. You might get killed by a car tomorrow.

Exactly.

Some good news for a change.

Yesterday I learned that my bone scan came back clean. That's the good news. Interestingly, I did not learn this from the urologist that referred me, the one who did my biopsy. He is the one who refused to talk with me about it over the phone. I learned of this from the PA who works with my primary care doctor - over the phone. The hospital that did the bone scan procedure sent the materials to my urologist's office. They forwarded this information along with the rest collected by his office to my primary care doctor. The PA had the kindness and good sense to just straight out tell me. The urologist was insisting that I pay him an office visit for the same information. Now, I don't really know the reasoning behind his decision, but I have the thought that it might have something to do with charging me for an office visit.

I do know that I have already received a bill for the first office visit, which, from experience with the billing processes from other medical offices around here, falls into the super-efficient, very quick category.

I have an appointment with a radiologist, referred by the urologist's office, on Friday. My sense is that although I was told by the urologist that there is no rush in choosing a treatment method, I am being rushed into referrals and appointments dealing with treatment methods. There is a lot more to learn and understand about what's going on in my particular case before I get to the point where I choose a treatment. My wife has ordered a copy of a book entitled The Invasion of the Prostate Snatchers. Before I make any kind of decision I will read this book, and read the fine resources provided to me by my daughter and friends.

I can see where it is easy for a person in this situation to feel that something has to be done quickly, and to just not think about it too much and do what the doctor says. Problem is, some doctors have a limited repertoire of responses mostly focused on what they have trained for and practice. Understandable from their points of view, but not from mine.