An answer to a nephew

During the spring of 2015 my PSA rose quickly. By May it was 350. In June I began to take Zytiga and prednisone. In the first three weeks of being on that regimen, the PSA dropped to 89.  Naturally, I hope that decrease continues.  During the spring I wrote to the family and Keenan, one of my nephews, asked me if I could explain things better. What is attached below is my letter to him. I hope you find it helpful.

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April 30, 2015

Dear Keenan,

As a result of your question to me, I went to see a second-opinion oncologist today. It was a pretty neat experience. When I tried to answer your question of a couple of weeks back, I realized I didn’t know a whole lot about the biology of prostate cancer.  That lack had been deliberate on my part because when I first got cancer I went on line and read a lot of stuff that basically just scared me. So I decided to just trust my urologist which I did for all these years.  But as the PSA went up and the tumor appeared in my hip bone, I got more interested in what this stuff meant. Your inquiry put me over the top.

I did some reading and discovered that I am in a place where it is not exactly clear what is happening to me and what the sequence of treatment might be. Thus, off to the second-opinion guy.

I had two questions: What is the biology of prostate cancer? And Is my current treatment correct, or at least acceptable?  The answer to the second question is that yes it is acceptable.  Here is the deal. When I go to the oncologist, the first question always is Do you have any pain?  I say ‘no’ and then we talk about other things. So today I asked, What if I say ‘yes’? If I say yes, then I am what is called ‘symptomatic’, that is, my tumor is causing problems and they need to do something about it. There are a range of methods to deal with that eventuality. I won’t go into them here. Basically they are various levels of radiation or chemotherapy.  Because I say no, I am ‘asymptomatic’ which means that whatever evil the tumor will do has not started yet, which is good. I workout, feel positive, rock climb, run a photo club. I do what I want to do and am not restricted by my physical condition. That is good. As a result the prescribed treatment is more pills of the ‘miracle’ variety. That means that they can slow down the cancer (though at this point there is no cure for what I have).

Well, that discussion led into How does all this work in my body?  First, why did my (or does your) prostate produce PSA? The answer is they don’t know. PSA is an antigen. Basically antigens are bad to have in your body. You can look up a definition to know more. When antigens invade your body, some mechanism in your body produces antibodies, which are good. Apparently the two things maintain some kind of equilibrium in a healthy male body (a ‘good’ PSA for men is 4 or below). Cancer happens when the PSA jumps ahead of the antibodies (I think).

What produces PSA? First, your prostate. But if you have cancer and they take the prostate out, then some residual of prostate cancer cells produce it.  Here is the deal, according to my oncologist this morning—PSA only tells how fast something, probably a tumor, is producing PSA.  It does not tell how bad or extensive the cancer is. So, the oncologist pointed out, I could be in a room with my PSA of 50 and someone else could be there with a PSA of 10 but he could have more extensive cancer than I do. As a result of that fact, not just PSA but whether you are or are not symptomatic, indicates what a doctor should do. I am not symptomatic at this point, so there is less urgency than if I were.

All that of course leads to Well, how long have I got? Do I need a bucket list?  His answer was I don’t know how long you have. You could have 6 months and you could have 20 years.  The thing is that prostate cancer is very individualized. It is, apparently, not predictable other than in a very general way. That means that one day somewhere in the future I will wake up with the pain that tells me and the oncologist that tougher treatments have to be used. Then I might get a bucket list date.

What I take from this discussion is that I live with a “certain uncertainty.” By that I mean that everyone lives with uncertainty about death. Anyone of us could, as the old saying goes, get hit by a bus tomorrow (harder in Menomonie than in a big city, but even we have bus routes). That is uncertainty. Certain uncertainty is that probably the cancer will eventually kick in with the pain and then I will have a different issue to deal with.

I am left with Plan and Do. So I would like to go back to Germany (I have studied German since July and can read and speak baby sentences), go to Africa where Mary has always wanted to go, delight in the trip down the River which your dad has wanted to do for years, and your Uncle Mike can’t wait to get going on, plan my 50th college reunion (I was the president of my class, and the valedictorian), plan our 50th wedding anniversary.  You get the idea.

And so, to you, Thank you. Your question got me off my ass, got me reading, got me to formulate questions (at midnight, one dark night, writing feverishly into a little note book I keep by my bedside), and got me to act so that I had the appointment I had today.  As I have said, I count on you.  And you came through.

If you have more questions, ask them. You have a great track record.  In the meantime here is the hug I tell everyone to give those that you love. I love you, and I hope I see you and yours before all too long.

Dan