Tom Droege is a long term advanced prostate cancer survivor. He wrote this post on the Prostate Pointers Mailing List and has given me permission to reprint it. This gives a little window into his world and his battle with prostate cancer.
Hang in there Tom
“These are just my observations and have no scientific basis.
Doctors don’t tell you what to expect. They seem to live in
a world where one never talks about future pain, getting
weak, sick, or dying. There is a reason for this. If they
don’t tell you that you have pain in store, perhaps you
won’t get pain. So they don’t want to give you a guideline
for how to feel. They don’t, for example, tell you that
when your PSA gets to 1000 (or some such number) that you
will die. This would just give you permission.
1) The older you are at diagnosis, the more likely it is
that you will die from something else. This makes sense to
me. A prostate cell that starts growing at 80 is old when
he starts, and like a person at 80 he just doesn’t have the
energy to “take over the world”. On the other hand, if you
are young and vigorous, then so will be your cancer. Sigh!
Not good news for the young, but realistic.
2) The cancer uses a lot of your energy. Expect to get
weaker and weaker. While you still have energy to do so,
design your environment to minimize your energy
requirements. There is a real trade off here. If you
exercise vigorously, you will get tired. If you don’t
exercise, you will get weak. There is some compromise to be
found. In my case, I have a young man that comes in and
does things that I can’t do. I bought a push up chair and
he put it together. I bought a stair climber and he
installed it. I just sit in my push up chair and direct him
to set up the computer where I can reach it. Such things. I
had a hospital bed for a while set up next to my regular
bed. I later changed it for the push up chair which is more
practical for me. I sleep in my regular bed at night and
move to the push up chair during the day. “Grabbers” are an
essential part of my life. You need them spread around the
house in pairs. If you drop your Grabber you need a second
one to pick up the first one. I find that just rolling over
in bed is a big project. Sigh! You don’t know all the
muscles you use until you get weak and can’t do something.
But one can learn how to do these things with minimum
3) My doctor let slip something that made me think. He said
that malignant cells were found in the bones at a very early
stage of the disease. A very radical thought is that the
disease starts in the bones and migrates to the prostate.
Less radical is that cancer cells migrate to the bones (if
they are ever going to do it) very early in the disease.
This means that those of you that feel guilty (I am one.)
that they were not more vigilant in watching their prostate
should not worry. It probably made no difference.
4) Early on I came across a statement that “there was no
study that demonstrated that any treatment extended survival
for prostate cancer”. I confronted my Oncologist and my
Radiation Oncologist early on with this statement. The
Oncologist did not argue with me. He is a good guy and knows
that he has very few tricks in his bag. The Radiation
Oncologist had a slightly different view. He said that
radiation has been demonstrated to shrink tumors. For me
this turned out to be true. A year ago January one of my
mets gave me a terrible pain in the neck. It was just
awful. He zapped it and the pain went away on the first of
6 treatments. It has not returned. So sometimes radiation
can cure specific pains. Since I now have mets everywhere,
one cannot zap them all. There is hope that the ones that
give you real pain can be “fixed”. But every treatment has
a side effect. In this case my taste was messed up for
about 6 months.
5) Every treatment has a side effect. Some more than
others. I started a course of Ketoconazole It is an
anti-fungal and is in your Oncologist’s bag of tricks. He
doesn’t know why, but it seems to slow down PSA rise. In my
case, it made me 100% suicidal. All I could think about was
how to do myself in without it being too much of a shock to
Jennifer. I finally decided that the best way would be to go
down into the garage, get in to the Rolls and turn on the
engine with the door closed. I can’t think of a better CO
generator. In the end, I worried that a long idle might
damage the engine so I did not do it. I quit taking the K
and my doctor agreed with me. Later I agreed to a Taxotare
treatment. This was just awful. It basically took away any
life I had for a year. The study says it extends life for a
few months. So a real net loss. I am not giving medical
advice here. Just be sure that you are aware of the
possible side effects and make sure that the gain from the
treatment will be more than the loss from the side effects.
The goal should not be to stay alive at any cost, but rather
to have the most “good” days in the rest of your life. If
you press your Oncologist, he will try something. Be sure to
discuss with him ahead of time how to decide to discontinue
the treatment if it looks like the side effects are worse
then the expected gain.
6) Lupron (and the like) if it ever does anything
eventually fails. Lupron clearly keeps the PSA down and
shrinks the tumors. It is not obvious that this relates to
survival. It has the usual bunch of side effects, enlarged
breasts, weakness, etc.. It seems to me (and my doctor
agrees) that it works on only some of the cancer cells.
There are apparently two types of cells. There are fast
growing cells attacked by Lupron (Let’s call these type A)
and slower growing cells that are not (Type B). The Type B
seem to be less energetic, but (possibly) more lethal.
Lupron treatment kills off the Type A, leaving the field
clear for the slower growing Type B. This is why pulsing
the Lupron might help. Let the Type A grow for a while and
crowd out the Type B. Then zap the Type A. This slows down
the growth of the Type B. Now repeat the cycle.
7) Depression is something that comes with the disease.
Possibly PCa will get you, possibly you will be hit by a
truck or a Tornado will get you. In any case, it reminds you
that you will not live forever. You knew that all along,
didn’t you? Your doctor has wonderful chemicals for this.
Try them, they might work if you are depressed. In any case,
focus on how to make the life you have better. Then you
will have a goal and will be less likely to be depressed.
8- Blood Clots are something that is caused by the cancer. I
had funny chest pains. My doctor finally sent me to the
emergency room. It was a great experience. Chest pain got
me in immediately. It is bad form to have patients keel
over in the waiting room. It took possibly 30 seconds
waiting before a nurse came out and got me. Five minutes
later I was hooked up to an EKG and they determined that I
was not having a heart attack. They then sent me off for
an MRI. About 20 minutes later I was back in the emergency
room bed and they were poking me with blood thinners. The
doctor was quick to inform me that I had blood clots in both
lungs and that it was pretty serious. I was really
impressed that they figured it out so fast. I guess I am
lucky to have a great local hospital here in the burbs of
Chicago. Delnor community hospital. Later when I looked up
lung blood clots in “Lang-Current Medical Diagnosis and
Practice” it said “Usually diagnosed at autopsy”. This
means blood thinners for the rest of my life. Sigh! All
drugs seem to interact badly with Warfarin.
As a summary of all this, there is not much that can be done
for this cancer. It is going to get you if it is going to
get you and there is almost nothing that can be done about
the disease. I don’t mean to be negative, just realistic.
You can, however, do a lot about your life. You can still
have a life with Prostate Cancer. Take control. This is
different from “Fighting this Cancer”. You “Render unto the
cancer the things that are the cancer’s, and take all the
rest for yourself”.
Reprinted and posted by:
Joel T Nowak MA, MSW