[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 minordilation 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.
I'm now three and a half years post-surgery. My PSA is still undetectable. So I'm likely to survive for a long time.
I'm having some continence problems on cold-weather walks, especially if I drink any coffee. It's a bother. But I'm not doing Kegel exercises, and I'd probably improve if I went back to them. I'm doing self-catheterization three times per week. With that regimen, my urethra is stable, no need for more dilations.
Injections still work well (0.07 ml bi-mix) -- I've been doing them for two years! Viagra has some effect, but not quite enough to give up the injections.
All in all, I'm doing fine. Color me "stable".
Not much change in the past year. Still undetectable PSA, still using b-mix injections, Viagra is still not quite good enough. I'm still taking Viagra every second day; nerve regeneration may be a myth, but I'm determined to help it out if it's not.
After a year taking Wellbutrin (an anti-depressant), I decided to try some non-drug anti-depression treatments. I'm exercising 4x per week for an hour, eating a little better, taking vitamin D and B-complex supplements, and losing a little weight. I'm also using a light box (or making sure I get out in the sun) for 1/2 hour each day.
All that, together, seems to work -- I quit the Wellbutrin a month ago, and I'm feeling very good.
I just did the Vancouver Sun Run, a mass-start 10K with 49,000 other people. I could handle a fast walk -- time of 1:35, just under 10 minutes per km. No leakage!
I'm also back participating in local drum circles, and I'm taking singing lessons -- I want to be more competent in a chanting group I've joined.
So life goes on, and I'm slowly recapturing some lost ground.
After one more year:
Bi-mix injections still work fine. Viagra isn't quite good enough for intercourse. I've been using a Jackson Medical "J Clamp" for long walks -- it's quite useful. I started doing Kegel exercises yesterday; must keep those up. Still doing self-catheterization, twice per week. And because of that, no further urinary problems.
My depression has not returned. Enough time in sunlight, and with a lightbox during the winter, and enough exercise, and supplements, seems to be adequate treatment. My Wellbutrin is going stale.
I did the Vancouver Sun Run again this year, in hiking boots (because of an arthritic big toe). Time for the 10K was 1:39:51, right in line with my 1:40 target. Not bad for an old guy in hiking boots.
Singing lessons have become a joy -- I enjoy them (and some choir work), and my voice has improved a lot. I also got a proper digital piano, and am starting to recover some old technique. Also learning blues piano.
So life _does_ go on, eh?
No change. I really should be doing more Kegel exercises. Bi-mix injections still work fine. Still playing piano, still singing. And active on the USTOO "Inspire" prostate-cancer forum online.
a) I'm responding to Viagra - it only took 9 years after surgery! I'm still using bi-mix injections regularly, but Viagra will now give me a usable erection. Empty stomach, two-hour wait time -- not nearly as convenient as sticking in a needle and getting into bed. I may eventually switch over, and give up bi-mix.
b) I'd been having slowly worsening incontinence, especially late in the day. I saw a pelvic-floor physiotherapist a month ago. I've been doing Kegels regularly since then:
. . . My incontinence is improving !
Not yet "no leakage", but much less leakage. My next appointment is this coming week, and it may be my last.
I have a new urologist, who was doubtful that Kegels would do any good, so long after surgery. What a pleasant surprise to prove him wrong!
Charles's e-mail address is: email@example.com