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Advice from Jack Jennings:
I'M MAD AS HELL!
(In response to my post of 1/28/00.)
Robert,
I've been diagnosed with prostate cancer and I'M MAD AS HELL!
Oh how
well
I remember this feeling, as well as, "WHY ME? I didn't do anything to
deserve this!," along with, "How can ANYBODY understand this
GIBBERISH!"
Although the first two feelings are quite common with many of us, the
third
is a very special frustration reserved exclusively for those who decide
to
become involved in making the decision of WHAT treatment to have,
WHERE,
and BY WHOM.
There is a way to avoid this: just put all of these decisions in the
hands of some doctor and do what he/she suggests.
I started out with this intention.. My urologist told me that I was a
good
candidate for an RP. He told me that I should consider other options,
and
suggested that I go on a Casodex/Lupron regime to "buy me time" while I
made up my mind. He did remark that no other treatment works as well
as an
RP and quoted Dr. Walsh's statistics as if they were his.
I took the
first
Casodex pill and thought that it might be interesting to find out how
this
drug, when used along with Lupron, could stop my PCa from growing. I
read
the poop sheet that came with the Casodex, then went to the FDA web
site to
investigate Lupron. One phrase in the FDA document jumped right off
the
screen, "Approved for the palliative treatment of terminal prostate
cancer
patients"!
Was there something this doctor wasn't telling me. I knew what
"palliative"
meant, as well as "terminal" and went ballistic! It was too late
to
call the doctor so I sat up that night reading everything I could find
on
the net. Over the next few days I hardly slept at all. Then off to the
bookstore, to the library, back to the Web. My fiancee told me in no
uncertain terms that she wanted me to get the BEST treatment possible,
and
yes, she was still going to marry me, even with impotence and
incontinence
as definite possibilities.
It didn't take long to find the best surgeon, Dr. Patrick Walsh, only a
three hour drive down to Baltimore. Reading his research papers
confirmed
that is results were exactly those that my urologist had quoted. I
guess
my urologist must be pretty good? Then I found out that Walsh did not
ever
take patients like me with a Gleason 7. A quick read of Korda's book,
Man to Man revealed that the side effects of RP, even when performed
by
Dr. Walsh, were not inconsequential, as my urologist indicated.
To say I lost faith in this urologist quickly would be an
understatement.
I called his office an told his office that I had stopped taking the
Casodex and although I did want to consult with the doctor on my
scheduled
visit, I did not want the Lupron shot yet since I had just started
researching treatment alternatives and had found out that Dr. Walsh
would
not take any patients who had had Lupron.
Fifteen minutes later I received
a
call from the doctor's nurse. She told me that I had made a "very
dumb"
decision, that I was "putting my life at risk" and a lot of other stuff
that I had never expected to hear from a medical "professional." When
told
of this, my "step-daughter-to-be" Jeanie (a registered nurse) was
appalled.
I never did figure out if the nurse was sleeping with the urologist or
if
she was angry at the huge amount of money they were missing for the
Lupron
shot!
Robert, for the next month I had all the feelings you expressed in
your
post and then some. Even with the advantages of a formal education in
science and academic research, I often found myself, with a medical
dictionary held open with my left hand while groping to find some
meaning
in the abstruse language of some phrase in some medical paper that I
was
pinning down with my right!
Now looking back on this very hellish portion of MY life, I can tell
you
that FOR ME, it WAS all worth it. Two years after treatment my PSA is
0.3
(just got the news today), my sex life is great, and I don't wet my
pants.
I can't guarantee that it will work out the same for you but the
alternative is to stop what you are doing that is causing you all this
grief
and just asking your doctor to schedule you for whatever treatment he
thinks is best. After a rather confrontational consultation with that
urologist, he sheepishly confided to the lovely lady Sharon that most
men
just want to be told what to do.
It's your choice!
Jack in Sicklerville, NJ
[name used with permission]
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| This information is provided for educational purposes only and does not replace or amend professional medical advice. Unless otherwise stated and credited, the content of Phoenix5 (P5) is by and the opinion of and copyright © 2000 Robert Vaughn Young. All Rights Reserved. P5 is at <http://www.phoenix5.org>. P5's policy regarding privacy and right to reprint are at <www.phoenix5.org/infopolicy>.
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