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[Note; the following piece begins with old information. My PSA did go from 14 to 50 and then it went up again to 350. At that point my oncologist switched my treatment to prednisone and Zytiga. Three weeks after I began that treatment, my PSA declined to 89. I will not have a followup reading until the middle of September. The rest of the piece is my ruminations about this disease. To see another view of this, see my previous entry which is a letter to my nephew about the same issues.]
My PSA recently increased from 14 to 50. This increase
occurred after the PSA had decreased from 22 to 14. The decrease occurred
during the first two months that I was taking a twice-daily dose of
dexamethasone. The increase occurred during the second two months. I am now waiting until the end of May to
discover whether continued use of dexamethasone will again reduce my PSA or
whether it “fails” and I need to begin a third medication. As I understand it if the third one also
fails there is a fourth and then chemo.
After I announced this development my nephew wrote to me
asking for an explanation in layman’s terms of PSA. I couldn’t supply it and
after reading various websites, still can’t.
The two issues have caused me to look closely at the biology
involved and my emotional state. At this point I feel imprecision and
indecision.
One dimension of the imprecision is the process of PSA at
work in the body.
This seems clear. Antigens are bad. Antibodies are good. But
then my questions begin. Why does the prostate produce antigens? Does a part of
my body produce PSA-fighting antibodies? What does a rising PSA really mean?
Because I have had my prostate removed what in my body is creating PSA now? Is
the rise and continued production related to tumors that have formed?
When I read various sites, I find the definitions, but not
the description of the process. The sites quickly move to discussions of the
PSA blood test and the effectiveness of screening. Those discussions are very
clear, but they seem limited to the test and not the far-ranging biological
process or the emotional reaction to the increase.
Another dimension revolves around the meaning of my original
Gleason score of 9 and the fact that even in the prostatectomy the surgeon
removed part of my vas deferens. At this point I have a biopsy-identified tumor
in my iliac crest--a bone in my hip structure, and two other probable tumors in
my abdominal cavity.
What do those facts mean for me in terms of quality of life
and life expectancy? When I read
websites about them I find very technical descriptions, some anecdotal stories
of maintaining ones calm, and calming stories of the “there will always be help
and comfort at the end.” None of them
are useful to me.
I have found it hard to know quite how to react to my rising
PSA. When it first started to go up, my urologist told me that I was “not at
risk” (of dying soon) but that I could have quality of life issues. Exactly
what those are, or could be, is not clear to me. After the PSA climbed above 2
the urologist said he had done all he could and that I would now need to see an
oncologist, which I am currently doing. The oncologist is very focused on the
PSA number and some other questions that I will discuss in a minute. The goal is to control the number, to prevent
its rise. If it rises, the oncologist switches the medication. So far I have
been on two medications and expect to begin a third at the end of May.
The questions he asks have to do with discomfort. How am I
feeling? Do I have pain? I answer “no.”
I feel pretty good. I work out with weights three times a week and rock climb once
a week. I have noticed no diminution of
my ability to perform at either activity.
I have increased my skill level at rock climbing. Once I answer in this manner, the discussion
of discomfort ends and we are back to the numbers. At the last appointment the oncologist told
me that rising PSA might not mean as much bad as it could if it is accompanied
by a stable body health. I have both.
The indecision is the result of the issues with the health
description. The basic feeling that I have to fight is What is the use? Why
bother? I find that this reaction occurs
both to the prescribed course of treatment and to almost any decision relating
to my future, such a planning a trip. If
it takes about 4 months to determine whether a medication is working, and if I
have two more medications to go, then in eight months or around the end of
January 2016 I will begin chemo. What should I plan for 2016? You see the
issue? It is a tough one to negotiate.l
I have done some
reading. Prostate tumors come from prostate cancer cells that have travelled to
a new location. Well, OK. But what does
an increase in PSA mean? That there are
more tumors? That more cells are making
PSA? I don’t know.
Today, though, I can talk about how the two
issues—indecision and imprecision—come together. I have blood in my urine today after none for
about three weeks. It is a bit thicker than usual and it has passed on four consecutive
urinations. Usually the bleeding stops after two. The first bleeding often
passes a clot with blood and then the next bleeding seems to clean out the
residual blood. I have seen the clot in three of the urinations. The first one
happened while I was defecating; if there was one, I didn’t see it.
OK, now for the interaction. What does this bleeding
indicate? Why has it started up after a three-week layoff? Well, this week I changed my diet. I have gone to a heavily plant based diet. We
have only had meat one day this week, chicken last night. We had trout one
night and two nights were vegetarian. I am eating a half avocado a day. There
is some indication that avocado contains a chemical that might fight the
cancer. I also drank my first cup of
green tea yesterday, a practice I expect to continue regularly. Did the diet change cause this bleeding? I suspect not , but I am not sure. So, should I continue on this dietary
regimen? Or is it silly, that is, having no effect, or dangerous, that is,
causing the cancer to react to what is passing through the urinary and colonic
tracks?
Today, too, I have a dull ache in my lower right groin. I have had it before. I comes and goes. My
primary doctor thought it was related to the rock climbing I do. I often
stretch out into extreme angles at my hips. He thought it was some kind of
sports hernia. On the other hand the CT
scan I had last year indicated that there is a mass in my rectal area and my
urologist confirmed that it is there—he could feel it. But he wasn’t sure it
was a tumor.
So what should I do? How do I react to this mild pain? The best is to just ignore it. Figure old
bodies get pain. It goes away. But when I let in and im kick in, then I can
wonder if the pain is a symptom. I don’t
like the kind of worry. I don’t have the answer to the questions. I don’t like
leaving what could be potentially dangerous (at least so I think, but I have no
idea) alone. Should I do something about
that? Talk to someone? I tell Mary, and the doctor when I see him, but that is
all. I hope what I do is right.
I can give another example related to the bleeding. Often a
bleeding episode occurs when I have a pressure on my anus. It feels like I need
to sit down to take a bm. (I have decided to quit using words like crap or shit. Less aggressive seems better.) Sometimes I do sit and stools,
urine and blood emerge. Sometimes I just
stand at the toilet, the urine and blood emerge and the feeling of needing to
defecate goes away. Sometimes I sit and
a stool drops and urine but no blood. Today I have had all three experiences.
Granted the context I am putting all this in—in and im—how do/should I react to
all this? Ignore it? Worry that the tumor is getting bigger? I find this area
tedious and it is one of the things I mean when I say that a person has to fight
cancer often in not very obvious ways.
The other thing that has happened is that the PSA jumped.
Mary and I had several end-of-life discussions. Then things settle down and I
jump back from that boundary and deal again with the ordinary vicissitudes of
this disease and daily life. When really
do I need to do end-of-life thinking?
Perhaps always or regularly but as often as I visit the oncologist,
every couple of months? Or about the same as anyone else who is past 70 and
does not know whether the proverbial bus will run you over today.