Holding Off As Long as Possible on ADT

In a nutshell. I had surgery in upstate New York in the fall of 2009. Gleason 8. By the summer of 2011, that had clearly failed (to me, not my surgeon) and that fall I moved my case to MSK in New York City. Did ADT + SRT at MSK in the winter of 2011-12. PSA remained undetectable until January of 2015, emerging again at .08. Since then PSA has gone up steadily, sometimes "idling" for a few months before resuming its climb. In my layman's mind, I describe the rise to family and friends as "linear" as opposed to "exponential" in any time period. Latest PSA in February 2020 is 7.21. Testosterone is 470.

Along the way I enrolled in an immunotherapy trial using injections of recombinant viruses that hopefully would stimulate an immune response towards PSA expressing cells. These agents are called PROSTVAC. I honestly cannot say if the treatment helped or not -- the linear pattern continued as before treatment, but I would like to think it helped some. Overall study results not available yet, so hard to say for any one participant.

As part of the study, I have undergone extensive blood work and bone and CT scans, measuring 40+ blood factors monthly, as well as other standard tests such as EKG. The good news is that, other than this one PCa with Gleason 8 glitch, no other health issues have been detected: blood pressure, cholesterol, weight, bone density, cardiovascular measures, urination frequency, blood sugar, blood counts are all excellent. I mention this only as context for a discussion I had with my MO in February.

He several times framed our discussion by saying that we should weigh the "risks of bodily harm from treatment "(that is ADT) against the risks of "bodily harm from the disease." His view was that given my overall good health, that at this time the risks of treatment outweigh the immediate risks from the disease. He also said we should be conscious of "lead time bias" in a case like mine, where there is no current evidence of harm from the disease. This is a rough summary. I would say his remarks were nuanced, especially about lead time bias.

In the past discussing ADT, I have often said that I prefer to feel like me for as long as possible, having experienced ADT once. He said he hoped for that too. Of course that was easier said by me when PSA was in fractions.

I am trying to look at it this way. Social Security cohort tables for American men born in 1943 (my birth year) project an average life expectancy of about 81 years for men still alive, taking into account deaths that have already occurred. Over 1/3 of the men born in 1943 have already died, a fact reflected a few years ago at my college class reunion. I have no reason to believe I am an outlier, so my personal estimate of three to five year life expectancy from here seems appropriate. If I can delay starting ADT for say another year, that would be a very significant percentage of my remaining life expectancy. (If I were age 50, one year would not seem like a lot, but now one year is significant.)

I like to think I have already won the lottery of a good life, being born where and when I was born, and living my life during two unique eras: the Age of Cheap Energy and the Age of Antibiotics. I recognize that my PSA might go exponential in any month (my MO thinks that is always possible, but less likely given my long pattern), and also know that ADT will eventually be required. But for now, I am very pleased to wait. Knock on wood. Best wishes to all!

Bill

I think you've got a very good plan and a smart MO.

All the best,
Andrew

My history has been akin to what paleontologist Stephen Jay Gould called punctuated equilibrium. Both after open RP surgery in 2002 and after SRT there were long stretches of no or minimal detectable PSA and then an accelerating upward trend. When my PSA returned after nearly four years of 0.00 following SRT it took 2 years to go from 0.02 to 0.2. But then it started going up rapidly. By the time I started ADT in May of 2018, my PSA had doubled nearly twice in six months.

I've been on break from Degarelix (Firmagon) since last April and the numbers are now ticking up again. Still low, but given my past trends I'm expecting an accelerating increase. I'll probably need to go back on ADT soon, not because of the absolute PSA number, but because of the rate of increase. My MO says when I go back on ADT he will add one of the other new drugs -- Xtandi, Zytiga, Apalutamide? He also mentioned Darolutamide, which I had to look up because I haven't heard of that one before.
Jim

Bill, great information and perspective. Don’t know what I would do, but I had three years of ADT from the start, though much younger. To do it again is not something Inwant to think about right now, but might be like Trailguy and go again. You can see my initial risk dx and my fortunate situation to continue to be undetectable. Always in the back of my mind regarding a recurrence and still test quarterly.

Where in NY? My oldest son is a doctoral candidate at Cornell and we visit every July.