With September still in full swing and fall making its appearance, let’s meet another member, Charles, who lets us into his world during his diagnosis of prostate cancer and beyond.
I was living in Vancouver BC, in 2007. I was 62, healthy, vegetarian, just finished a 3-year cruise on a 36' sailboat down the Pacific Coast to Costa Rica.
I had a slowly-rising PSA for several years, and my GP had cancer himself, and was watching the situation. At PSA = 8, he called for a biopsy, and I listened.
My GP recommended a urologist, who confirmed the need for a biopsy. I had several positive cores, Gleason 6. It was a TRUS biopsy, no MRI guidance -- MRI's were still being researched for effectiveness.
My urologist recommended surgery, and also arranged a consult with a radiation oncologist (which was very useful), and gave me contact information for the Vancouver prostate-cancer support group. I went to my first support-group meeting, and realized that -- looking at all the guys around me -- I probably wasn't going to die soon.
I also read all that I could about prostate cancer, its treatment, and the side-effects of treatment. I'd only been married 7 years, and my sex life mattered to me, and my wife.
I found the MSKCC nomograms, figured out that my PSA doubling time was 18 months, and found that, if that continued, in 18 months I'd have a PSA of 16, and the chances of a "cure" would be considerably lower than they were if I treated it right now. There were 5-years studies of brachytherapy, but no 10-year studies. "Active surveillance" with an 18-month doubling time didn't make sense.
So I decided to have open surgery (the robots were just becoming available), and deal with side-effects as best I could. My wife agreed.
My only unexpected side-effect was a urinary stricture, which required a trip to the ER to open. I've been self-cathing since then, just often enough to keep the urethra open. That's once per week, now.
I got into a hospital-based continence program after six months or so, and regular, coached Kegel exercises had me "dry", six months after surgery.
It was a year before I accepted that "penile rehab" wasn't working, and started using bi-mix injections. They worked well, sex returned to almost-pre-surgery.
I became active in the Vancouver prostate-support group, and have continued that.
Now, my PSA is undetectable. So I'm either NED ("no evidence of disease"), or "as cured as my next PSA test". The recurrence curve has a long tail.
I'm still using injections (now tri-mix, bi-mix is unavailable locally).
I've stopped doing Kegel exercises, and am leaking a bit -- going through one pad per day. Just laziness.
I'm still attending local support-group meetings. I'm active on three online prostate-cancer forums, and try to stay up-to-date on the disease and its treatments. I'm an "injection evangelist", and have a special interest in sexual problems -- physical, and emotional.
I've taken "peer counselling" training, which has been useful. I've lost track of the program, during this plague (COVID). I'll have to pick it up again.
Speaking from my experience (which is not the same as everyone's), three things I would want everyone to know:
(a) . . . It's a long, twisty road -- don't try too hard to see past the next curve.
(b) . . . You're playing dice --
. . . . . the stakes are high,
. . . . . . you don't know the true odds,
. . . . . . . and you can't leave the table.
(c) For prostate cancer especially, and for cancer generally:
. . . If you have a partner, it's a "couple's disease". That's often ignored by the docs who treat it.
I told lots of people that I had prostate cancer. Several acquaintances said "Oh -- me too!" One of those (with counselling experience) heard my worries about sex, and said:
. . . "If you want erections, injections are very reliable."
That backstopped me, and knowing there was a solution, let me work through the long process of oral drugs and VED's, to get there.
My wife, above all is my greatest supporter. Along with my GP (now retired). The men and women in the local support group, and online.
We kept sailing locally for many years, but finally retired and sold the boat when we became too old and damaged to maintain it.
I'm doing a lot of music. I've joined a large choir in Richmond, sing and drum in a chant group, take voice lessons.
"Prostate cancer support" has become a hobby -- I start the day by checking on the forums I frequent.
When the plague is over (= when there's a vaccine) I want to continue travelling. We've really enjoyed the places we've been so far.
As to CancerConnection, I'm in a "pay-it-forward" debt, because of the help I've received. Sometimes, I have useful advice to offer. Sometimes, I learn things. Often, all I can do is say "Me, too" -- and that seems to help.
Thank you for sharing yourself with us Charles and for your wisdom you so generously share on the site