My prostate odyssey began In 8/2008 when my primary care provider felt a lump in the prostate during a routine annual physical DRE. That infamous "bend-over" test actually pays off on occasions. Follow-up PSA was normal (2.52) and a urologist began monitoring me. A biopsy in 3/2009 showed cells that can become cancerous but no active cancers.
Over the following years, I became rather adjusted to the fact that I may just have a "lumpy" prostate as nothing much happened. Finally in 2013, the PSA values rose to 6.2 causing the urologist to decide it's time for retesting. An MRI confirmed a suspicious lump in the prostate with no sign of spreading to the lymph nodes or surrounding tissue. A second biopsy confirmed that the lump was cancerous with a Gleason score of 6 (3+3).
Our urologist offered a balanced summary of the three options (continued monitoring, surgery, or radiation) without pressing a specific method. We read all we could online (NIH, NCI, and ACS were the most helpful) and met with both the surgeon and radiologist to get their review opinions. It was a agonizing decision since my condition was borderline and a valid case could be made for each of the options. My wife closely participated throughout this process and proved a helpful researcher locating and evaluating studies of the three options.
After a month of indecision, we opted for surgery (DaVinci robotic). We rejected continued monitoring since my age (66) and health suggest a life span of 20+ years and by then even a slowly-growing prostate cancer will become a serious problem. Radiation spooked us when we learned that the resulting tissue scarring makes follow-up treatments more difficult. In the end surgery seemed simple and effective while leaving more options open for future treatment - hopefully never needed.
My surgery was in January 2014 and was described as very routine. I had some short-term throat problems relating to the anesthesia, but no followup medication or treatment was needed. Post-op pathology confirmed that the cancer was confined to the interior of the prostate but the Gleason was raised to 7. Being retired, the 10 days on the catheter was quite easy as I lounged all day in my bathrobes. I was more scared in anticipation of the catheter than the experience actually proved to be.
Psychological recovery was slower than physical recovery. It took me a few weeks to regain interest in the various hobbies that were the focus of my retirement activity. I could physically do them, but just was not interested in bothering. That gradually disappeared and my daily life now is no different from what it was pre-surgery.
Incontinence was the challenge following catheter removal. Luckily, from the first day, leaks were never more than a drop or two. I used a simple inventory clicker from the office-supply store to count leaks and plot them daily. This proved helpful as I could watch the count per day slowly decline. It kept me from becoming discouraged by the need for pads.
It is now 3 months post surgery and the leaks are down to a drop or two every 2-3 days, a level I consider tolerable (it started at about 10 per day). I no longer wear pads but remain careful to avoid abdominal stress situations that are likely to cause leaks. My PSA is now below 0.015.
ED remains the next mountain to climb. At this point, it is totally non-responsive but I take heart from the reports here and elsewhere that it takes 1 - 2 years to return to normalcy.
My lessons so far:
- The right path is a difficult choice. Read all you can but eventually do whatever feels right for you.
- It really is major surgery. As a very healthy person, I thought recovery would be a breeze. It went smoothly, but was still more than I had mentally expected.
- Find ways to give yourself feedback. My daily leak counts kept me from becoming discouraged when leaks happened.
It's now nearly 18 months post surgery and just met with the urologist for follow up. The current score board:
a. Overall health: Excellent. I do not feel that the surgery has in any way impacted on my strength or ability to live life as I always had.
b. Cancer cure: Excellent. The followup ultra-PSA tests are zero. They'll repeat the test semiannually until its 5 years out before declaring "victory".
c. Incontinence: Good. It is rare enough not to be a problem, but still has not dropped to zero. It's mostly a few drops following voiding -- leading to a wide range of dances, jiggles, and other techniques to get that last bit out -- but nothing works all the time.
d. ED: fail. This category is a total failure. Fortunately, it does not disturb our marital life but the thought that we'll never do "it" again is a bit annoying. Besides I'm supposed to be the healthy and indestructible one in the family who recovers totally from every mishap. I guess that's not the truth after all.
The urologist says I'm probably plateaued at this point. Further dramatic change is not likely.
Would I repeat it all knowing now how it ended up? I'm less confident that originally, but still feel it was a reasonable decision within the specifics of my life.
It's now about 2.5 years post-op. At this point I am being monitored via the ultra-sensitive PSA test where the scores remain at zero (anything less than 0.4 is considered "noise"). There has been no change in my side effects reported or in my opinion since the previous update. At this point I think of my self as cured, even if the doctors was 5 years of zero PSA scores before declaring victory.
As I near 4 years post-op, my latest Ultra-PSA returned a 0 score, confirming that there are no active prostate cells left in the body since the surgery.
At this point, nothing has changed in my day to day conditions. I still have some minor post-voiding drips that are manageable and 100% ED. Neither has a significant impact on daily living.
At this point the cancer and surgery feel like ancient history. I suppose I should proudly announce myself as a "cancer survivor," although it still feels weird thinking about myself in that way.
This posting marks 5 years post-surgery -- the point when most declare victory over cancer. The latest PSA is zero confirming no reappearance of prostate tissue within my body.
Aside from the previously-described complications, I feel that my life is unchanged. I've become very active at bicycling, traveling over 600 miles in 2018, averaging about 15 miles per ride. I also enjoy skiing and walking -- all very consistent with my enjoyments before this all began.
I think of myself in excellent health these days. At 71, I take no prescription meds for any needs -- just a few routine vitamins that my wife encourages on me.
It's now 6 years post surgery and I consider the prostate cancer to be ancient history. I did not bother to get an ultra-PSA done this year since they've always been 0.
This past year, I've ridden my bicycle a total of 1500 miles, and my wife and I took three international vacation trips. I do not feel that the cancer experience has changed my ability to enjoy actuve retirement in any detectable manner.
As the years roll on (8+ years since prostatectomy), life has been delightfully normal. The ED continues but causes no relationship problems. The occasional urinary dripping has either abated or I've learned how to control it.
Everything else feels very ordinary. As I near my 75th birthday, I bicycle regularly (1500 miles last year) and enjoy retired life. I don't feel like the prostate cancer and resulting surgery has had any long term impact on my quality of life. Mental and physical capacities are both in very good condition.
L's e-mail address is: ldgpangeo AT gmail.com (replace "AT" with "@")
