Charles
Cohen and Sandra live in British Columbia / Canada. He was 62 when he was diagnosed
in August 2007. His initial PSA was 8.0 ng/ml, his Gleason Score was 3+3 and he
was staged T1c. His choice of treatment was Surgery. Here is his story.
[I'm writing two years after diagnosis -- some things are hazy, but most are
clear. Sorry if some details are mis-remembered.]
I'd been having regular
PSA screening for years, with a very slow increase. After an 18-month gap, I went
from PSA 4.0 to PSA 8.0 in June 2007.
My GP was a PCa victim, and very
aggressive about treatment. He thought he felt something during DRE (Digital Rectal
Examination), and sent me to a urologist.
The uro felt something on DRE,
sent me for a biopsy. Results: Gleason 3+3, two cores positive for cancer out
of 12.
I walked out of the office in shock. I had done some research beforehand,
but the actuality was different, and far worse, than I expected.
Active
surveillance was possible, but both my wife ("Cut it out!") and
GP thought treatment would be better. Thinking about "active surveillance" --
waiting for PSA to increase, with larger chance of cancer getting out of the prostate
capsule -- I agreed.
I investigated surgery and brachytherapy. There's
a good brachy group locally, but (as my uro said) they didn't have long-term survival
data. And I was worried about long-term radiation effects. [The brachy group has
just published its results, and they're very good.]
According to what
I'd read, and what the radiation oncologist said, either treatment would be OK
for me, and the sexual effects would be similar -- both bad. ED after surgery
would be complete short-term, and possibly improve. ED would probably start after
brachy, and slowly get worse. Yuck.
The uro has done lots of surgery,
with around 2,000 prostatectomies. I trusted him, partly on my GP's recommendation,
partly because he'd done some rat-based surgical research. I figured anyone who
could do surgery on rats must have a good touch. I could never have a conversation
with him; he would answer direct questions (if they were carefully posed), but
wouldn't chat, and wouldn't speculate.
I had an open radical prostatectomy
on 31 Oct 2007. The cancer was organ-confined (negative surgical margins), and
both erectile nerves were spared.
I stayed in the hospital for 3 days,
came home and mostly stayed in bed for several weeks -- it's tough walking around
with an indwelling catheter. I was afflicted with bladder spasms -- very painful,
and opium/belladonna suppositories was the only drug that helped. My uro insisted
that the catheter stay in for 3 weeks.
The day the catheter came out, the
bladder spasms stopped -- a great relief.
My GP prescribed some anti-depressants.
I took them, and they lifted some of my depression. But they made me "non-orgasmic"
(not warned by my GP about that!). I decided I'd rather be depressed, and stopped
taking them (slowly!). I didn't search for a good anti-depressant; I wasn't in
a really deep hole, and I did OK without any.
I was having problems
with incontinence, and was greatly helped by a physiotherapist at the local bladder-care
clinic. After three visits (over three months), and lots of exercises, I was able
to throw around large pieces of carpet during a renovation, and not leak.
For
times when I needed to be out for a long time, I found that I was more comfortable
with a condom catheter than with pads. There is an excellent website Diapers
Be Damned with hints on condom catheter use; it was very helpful.
In
April 2008, I had an almost complete urinary stricture. I should have caught
it sooner, but the uro said (before surgery) that it was a "very rare" side-effect,
so I wasn't tuned in (or didn't want to be). It was only when I was going "drip,
drip, drip..." that I decided to go for help.
He tried to do a cystoscopy
in his office, but I yelled enough (the pain was intense) to stop him. I went
to the ER, and had a urethral dilation done "under sedation". I had an indwelling
catheter again, for a week, but no bladder spasms. My mood was black for a while
-- will this never be finished ?
I did some reading after that dilation,
and found that strictures often recur, and that one effective preventative treatment
is "clean intermittent catheterization". So I went back to the bladder clinic,
and received instruction from a nurse. Since then, I've been inserting a catheter
regularly -- first daily, and now every second day (21 months after surgery).
I haven't had a recurrence of the stricture.
My uro didn't suggest catheterization
(my GP gave me the referral to the bladder-care center), and he wanted me to come
in for more cutting. I found another uro, someone who would talk with me, discuss
things, and speculate. I've been much happier.
He insisted on doing a cystoscopy
himself when we started, and did a minor dilation of my urethra. It didn't
hurt enough to mention. As my wife said, "That's the cost of switching doctors."
Shortly
after surgery, I started using a VED for "penile rehabilitation" (no ring), and
taking Indian-sourced Viagra regularly. I was able to have orgasms without erections,
and kept up an active sex life in spite of ED. Sex is good, with or without erections.
It's one of the things that makes life worthwhile.
11 months after surgery
(September 2008), I got to see a local sexual medicine expert. She started me
on Caverject, and quickly switched to bi-mix when I complained of soreness, verging
on pain. The bi-mix was perfect. She wanted me to continue the Viagra (100 mg,
every other day), which I've done ever since.
Injections are miraculous;
I'm sorry I didn't start them sooner. I've become an evangelist. My wife says
that the first real smile she saw on my face, after surgery, was after my first
injection.
[Note: I'm using BD "Ultra-Fine II" diabetic syringes, 31 gauge
needle, 5/16" (8mm) long. Also a BD (or Palco) "Inject-Ease" auto-injector. With
that combination, there's no pain when I inject, and I don't see the needle pierce
the skin.]
In September 2008, I was completely non-responsive to Viagra.
Now (August 2009) I'm getting Viagra-aided erections that are almost "intercourse
quality". I can see very, very slow improvement. I give my original uro full credit
for doing a good job -- he did spare my nerves.
So my current status:
.
. . PSA < 0.01 (that is, undetectable).
. . . Inserting a catheter every
second day -- an annoyance, but it keeps the strictures away.
. . . Viagra
every other day, sourced from All Day Chemist in India (the only way I can afford
it).
. . . Injections 2-3 times per week.
. . . "Continence time"
from 2-3 hours, which is enough for most things (and I still have my condom catheter
when I need longer times).
All in all, it's not bad.
Charles
Charles'
e-mail address is: cpcohen1945 at yahoo dot com (substitute @ for at and . for
dot)
