Lack Of Clear Recommendations

This is written to Billytex1 in response to “So frustrated…”

I started reading voraciously when I first got my diagnosis, and one interesting fact I came across was that when you talk to urologists who, themselves, have just been diagnosed with prostate cancer, they report feeling about the same level of confusion about how to choose the right treatment protocol that you and I feel.

Here’s a big reason why: the technology, both for diagnosis and for treatment, is changing and advancing much faster than it can be evaluated.

The way you come up with a scientific consensus about long-term health outcomes is to do longitudinal studies. You select a population that are all alike in terms of their health status, treat some of them one way and others another way, and then follow them for ten or twenty years to see how they turned out. Longitudinal studies of prostate surgery have hit two major snags: As diagnostic technology improves, we see in hindsight that men who were grouped into the same cohort ten or twenty years ago actually included what we would now see as men with a whole range of different risk factors, and also (and even more significantly) men who underwent surgery ten or twenty years didn’t have the same surgery that you or I would have today.

For instance, I read in a book that laparoscopic surgery, while it had much faster recovery times than the cut-you-open-and-stitch-you-back-up kind of surgery, it had significantly higher rates of side effects. It turns out that was true when the book was published in 2004, but it’s no longer true in 2012. (I don’t know about you, but 2004 seems like the day before yesterday to me.)

Because of this, even if you were able to drag all your doctors into a conference room and browbeat them into coming to a consensus, it would be a false consensus based more on rhetoric than on evidence. Your doctors (and mine) are falling back on “this has been my experience…” because the evidence is scanty, and also because so much of surgery is an art that you master through practice rather than a skill that you learn from books. Surgeons learn to trust their own experience.

Perhaps a way to make this less crazymaking for you is to think of your doctors as explorers who have been sent out into a wild and uncharted land. Now they have returned home and you are selecting one of them to be your guide as you go there yourself. Their stories won’t all match, but you can get a sense from each of them of what it would be like to travel with them—what they saw and what you will see in their company—and make your decision based on that. Ask each doctor questions like, “What is your personal rate of success / rate of side effects in your patients? What type of treatment seems to work best for your patients?”

Absolutely the most reassuring thing that I heard in talking with my surgeon was that there is no screaming hurry to decide (though he did suggest setting a deadline for myself, just so that I didn’t end up putting it off ad infinitum). Even if my cancer is active and growing, it’s doing so slowly, so there is minimal increased risk from waiting. There is also a good chance that it is the kind of cancer that has come to be known as “indolent,” and may never progress. Andie is right that most men (not just most prostate cancer patients, but most MEN) die with some detectable prostate cancer, rather than of it (often discovered only at autopsy).

I think I will probably need the surgery at some point. That point could be next year, or it could be when I’m 80. My active surveillance will be like what you described: PSA’s every four months and an annual biopsy, though with the first of the follow-up biopsies being at the first of the four-month appointments.

In the mean time, it’s remarkable how thoroughly my life (my psyche, my spirit, my day-to-day experience) have returned to normal after spending a couple of weeks feeling like I was eyeball-to-eyeball with Mortality. I look back at the tone of what I’ve just written here, and I sound like a science magazine, and then I sound like a reassuring older brother. What I don’t sound like is someone taking stock of his life and gathering his courage to face catastrophic change and possible death. I’m well aware that it’s a luxury to feel this normal. I’m gonna enjoy my normal life for as long as I can.

I want to recommend again a web site that I found helpful in evaluating risks:
wabbott11 wabbott11
51-55, M
May 5, 2012