  Chris
Merrow and Deb Koltenuk live in Connecticut, United States. He was 53 when he
was diagnosed on 1 March 2005. His intial PSA was 5.0 ng/ml, his Gleason Score
was 4+3 = 7 and he was staged as T1c. His choice of treatment was Surgery. Here
is his story:
I am writing this on March 30, 2005. I was diagnosed on March 1. This was
the result of an annual physical that showed my PSA had increased from 3.0 ng/ml
to 5.0 ng/ml in the last year. I made an appointment with a urologist the following
week for a biopsy. He called me days later with the results- cancer in 2 of the
8 cores sampled and a Gleason score of 7 (4+3). We set up an appointment for a
few days later to sit down with me and my wife to discuss my case and treatment
options.
At first I wasn't really phased by this. I had known several
men who have been treated for prostate cancer who seemed to be doing just fine.
As I dived into the literature and began to research my situation my
level of anxiety started to increase. I realized that this was to be a life changing
experience.
I am 53. I retired 6 years ago. I was in government, my last
job was as the HIV/AIDS Administrator for the most of the State of Connecticut.
This gives me an all too familar knowledge of medical jargon, the vocabulary of
death and dying, and the nuances of the medical establishment. I was able to retire
earlier because my wife is the CFO of a division of a Fortune 500 company and
my salary as a civil servant had always paled by comparison.
After retiring
my main occupation became playing tournament tennis. I have been ranking in the
top 10 of men's senior tennis in New England for the last 5 years, To play at
this level I need to be in top shape. My routine has had me in the gym 3 days
a week, lifting weights and doing cardio and on the court at least 3 other days.
I am in great shape for someone my age, I regard myself as a semi-professional
athlete.
There was really no debate as to my course of action, the only
decision was whether to have robotic or open surgery. This was decided for me
by the discovery of two small hernias during the course of subsequent exams. I
can get the hernias repaired at the same time with open surgery and not with robotic.
The big decision for me became who was to do the surgery and where I was
going to have it done. I live in Hartford Connecticut which is equidistant form
New York and Boston. I could not find adequate data bases on surgeons in those
cities, nor for surgeons in Hartford. I was forced to rely on anecdotal information
from doctors who are friends and a few aquaintances who have gone the route. After
processing this I chose to have the surgery done in Hartford by Dr. Vincent Laudone.
I am scheduled to go in 8 days from today, April 6.
Right now I am trying
to get my body ready for the ordeal. I am decafffinating, I have quit drinking,
I am trying to keep up my exercise regimen. I have a feeling getting off caffeine
is important, caffeine withdrawals are difficult and from what I have read it
is not a good idea to do caffeine after surgery.
I find I care little
about the potential side effects. I care only, perhaps morbidly about margins
and the spread of the disease. My mother died recently of lung cancer, it had
spread from her throat, and there was months of talk of positive and negative
margins, and the ubiqutious "did we get alls", phrases I never want to hear again.
I am dreading the catheter. I am a light and difficult sleeper, I have never
been able to sleep on my back. I think this is going to drive me nuts. I am debating
the wisdom of getting a supply of ambien and valium for this period, wondering
how this drugs will affect my recovery.
This is where I am now. I have
valued reading the experiences of others on this site. Hopefully when I update
my post I will have a good result to report.
The
continuation of my story. The
good news is my PSA is >0. I became almost completely continent from the time
the catheter was removed - 8 days after surgery. I had needlessly gone out and
bought a case of Depends, a plastic mattress cover and other materials I thought
I would need but didn’t. My erectile function fully returned after about a month.
More on that later. Eight weeks after surgery I was able to play a major tennis
tournament, I am 54 and have been ranked in the top 10 in men’s senior tennis
in New England for 6 of the last 7 years - so I was in really good shape prior
to surgery. I won my match 4-6. 6-4 7-5 in the third set on a 102 F degree day.
It was, granted, too much. I was barely able to drive home, defaulted the next
round, and was prone for a day or so. The guy I beat Errol Coard was one of the
first Afro Americans to play Wimbledon. That was truly my Lance Armstrong moment,
an amazing high. From
this one can conclude that my recovery was miraculous and all is good. I should
be a poster boy for the success of surgery-I had an RPP because I had two hernias
done at the same time-discount rate by the way, and didn't go the robotic route.
But
all was not totally well. After surgery I developed colonic edema which kept me
in the hospital an extra six days, it was quite painful, and it kept my thumb
on the morphine machine. I blew up so I looked like I was about 10 months pregnant.
Then, after I went back to get the catheter removed, I reread some of the material
the doctor had given me and I noticed a section that said call the office immediately
if you experience any leg pain. I thought I had a simple pulled muscle but called
nevertheless and they said come done here immediately for an echo ultrasound.
As feared I had a blood clot in my leg. Fortunately it was in a small vein below
the knee. But if one reads the literature on blood clots, the chance of developing
a pulmonary embolism, one will scare one’s silly. It is a more serious condition
than the prostate cancer itself, with a 20% mortality. So we start 4 weeks of
treatment for the clot. The doctor advised that walking, with heavy support hose
was good, so I walked my ass off, getting up to about 5 miles a day 3 weeks after
surgery, which helped considerably with the speed of my recovery. So
my main advice to your readers here is that IF YOU HAVE LEG PAIN POST SURGERY
CALL YOU DOCTOR IMMEDIATELY. The
second strong piece of advice I want to pass on is that my biopsy results pre-surgery
showed that I had a Gleason 7-(4+3). My post surgery results showed that 10 percent
of my main tumor was Gleason 5. Thank God it was fully encapsulated. As we all
know if Gleason 5 cancer gets out of the prostate, one’s mortality rate soars.
My surgeon said my cancer was right at the margin. So again I am extremely lucky.
If I had waited and the Gleason 5 got into my lymphs in all likelihood I wouldn’t
be writing this today. So my advice to those on the fence is DON'T WAIT. So
again, I am lucky and every one reading this should think I should be extremely
grateful. I am sometimes. But other times I sink into a dark depression. Even
thought my erectile function returned my libido didn’t. My sex drive disappeared
and remains lost. I can stimulate myself through pornography but not naturally.
For me this is a major issue for I was always a highly sexual man, even though
married and faithful, I loved to flirt, to be desirable, to play the game. That
is all gone. Again, one may say big deal, but each of us has our own hierarchy
of needs. This
caused a depression I previously had to return, and started me drinking heavily.
This lasted for a few months. I gained close to 30 pounds. I grew more disgusted
with myself. Finally this April I hit the wall. Something had to give. So on April
1st, my wife’s birthday is April 2nd, I stopped drinking and started working out
hard again. I am retired, so I am able to work out or play tennis close to 30
hours a week. It is now June 1, 2006 and I am still sober. (I have a 1000 bottle
wine cellar now with a padlock on it-I really liked to drink). I have lost 12
pounds and am slowly getting back into shape. But
honestly, everyday is a struggle, an example of the AA adage a day at a time.
I know I have much to be thankful about, I have been extremely lucky, maybe that
is part of the problem. But as of today, that is where I am. Best of luck to anyone
who reads this, if I can help anyone in anyway, please don’t hesitate to email
me. Its
been a over a year since I last posted. All is good. I want to update a couple
of things I think important In
my post one year visit to my urology group, I was passed on to a different doctor.
He took a look at my info, and told me that I was in fact of Gleason 9 and not
7. I had not discussed the post op biopsy with the doctors before. A little over
5% of my tumor was Gleason 5, which upped my score. This caused me considerable
consternation. I
wanted to mention this because my tumor was right at the edge I barely had clean
margins. If I had waited at all, I scheduled the surgery as soon as I could after
the initial biopsy. I think I wouldn't be here today writing this, the Gleason
5 cells would have been out of the box. I
write this to stress the danger of delaying further treatment if you are younger
than 65 with a Gleason score of 7 or above. I first thought I was a 7 and was
really a 9, the mortality tables are much different. Although if I had known the
8 week wait for surgery after the biopsy results came in would have been far more
nerve wracking. So maybe all turned out for the best. Although it still gives
me the shivers to think I was carrying Gleason 5 cells, if my PSA ever comes back
with a +0 reading I think I maybe in huge trouble. Its
now May of 2008. I just had my blood drawn and presume I am >0 but 3 years out
this still creates anxiety. Every time I have a blood test I insist the lab mail
me a copy of the results and not just to my physician. It's
a distant anxiety, not really pressing, but its still there. I really wonder if
it is ever going to go away. The
reason I am updating is I want to briefly muse on the process of aging. As noted
earlier I am an athlete, in better shape now than when I first posted, because
I have add yoga to my routine. I can't recommend doing Yoga more strongly for
anyone, especially someone confronting and recovery from a life changing disease
like cancer. Done right with the right teacher, Yoga brings peace, equanimity,
clearer focus, there are a myriad of benefits. I don't wish to sound preachy,
of course this is just my opinion, but this site is about shared experiences all
of which are relative. Cancer
has become just one of many health issues I am confronting as I age. 6 months
ago I learned I had glaucoma which means daily eye drops for the rest of my life.
Last month I had a wicked attack of diverticulitis, which was extremely painful
until I got diagnosed by a CT scan and fed antibiotics for 2 weeks. In looking
up the causes of the disease there were only three, lack of fiber in your diet,
lack of exercise or age. It surely wasn't the latter two so it was simply age.
The CT scan I had for this revealed "significant calcification of left anterior
descending coronary artery". A stress test and more diagnostic work is scheduled
next week. I have no idea what this is going to led to. Again the cause is simply
age. I am only 56. The
prostate cancer was the first great insult to my body that I had ever suffered.
The last three years has seemed like one new event after another, with little
let up in between. My experience with the cancer has inured or hardened me so
I can more readily take each new blow in stride. And that's what aging is looking
like right now, a continuing series of insults and indignities. I
desperately long for a year or so free from further bad news, from new disease,
I just want to feel healthy and reasonably normal for a longish period of time.
I am trying not to grow depressed by the potential realization that this is not
going to happen. That here on out is going to be a near constant parade of one
thing after another. But
hey, if you are reading this, we're all still alive. And that is all, in the end,
that really matters. shanti/peace
chris
m .
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