“It’s time to pull the trigger…”
My wife and I sat in silence, stunned after hearing this. I had anticipated some reassuring words and a suggestion to return in a year, not this. For the past 18 months, I had been on a program of active surveillance for a low grade, low volume prostate cancer. We were now sitting in front of Dr. Eric Klein, Chairman of Urology at the Cleveland Clinic and expert in prostate cancer treatment, hearing these words. No, no, no, my mind said quietly inside me. All you need to do is get another opinion and you can continue to watch this. There is plenty of literature saying you can stay put. However, Dr. Klein’s voice, both reassuring and authoritative, continued: “no more active surveillance, it’s time to switch to the treatment group.” In the slides his pathologists received, they found a number of cribriform glands, which he told us are associated with a higher failure rate of active surveillance. Thus, after 18 months of watching, I began preparing for a prostatectomy. I am now 2 weeks out. My bladder catheter is out, and the focus is on recuperating and getting ready for my return to my regular life in a couple more weeks. Fortunately, my cancer was contained within the prostate gland and all of the lymph nodes removed were free of tumor, but there is still a chance in the future the tumor will manifest itself either in my pelvis or elsewhere in my body.
Prostate cancer is the most common non-skin cancer affecting men. It is also responsible for the largest number of cancer deaths in men. It can be of low grade and mostly insignificant, or aggressive and the cause of death. Our current inability to determine with 100% certainty who needs to be treated is the focus of the whole PSA screening controversy. Since my diagnosis, I’ve had a number of friends and family members suggest to me “why don’t you just get it removed, then you won’t have to worry about it.” Dr. Howard Parnes from NCI spent significant amounts of time with me on the phone, email, and eventually at his clinic in Bethesda educating me on prostate cancer, and in summary what I learned was that a prostatectomy is potentially curative, but can be associated with significant side effects. He spoke of the trifecta of goals of prostatectomy:
1 – cure the cancer,
2 – retain urinary continence, and
3 – avoid erectile dysfunction.
But he emphasized that even with a radical prostatectomy there is no guarantee of a cure. So here I am 2 weeks later. My pathology report looks good, I am pretty much continent, and ED? I really don’t know yet. With a sore healing incision and occasional urinary dripping the last thing on my mind at this point is sex.
My mind has done some challenging things to me over the course of the last few years which I would like to discuss. Prostate cancer has been on my mind for years. As a physician aware of the numbers, I tried to do the “healthy” thing for my prostate. Tomato sauces, supplements, physical fitness and of course yearly prostate exams and PSAs starting in my 40s. Current research would say I probably overdid it. There is talk of the “worried well,” those patients that have a low grade, probably insignificant prostate cancer but because they have “cancer” live in a world of constant worry. Had I not “pulled the trigger,” would my results be any different? Will my survival be any different if I had waited until my family doctor found a prostate nodule at a routine visit and I had been treated then? The so called “lag time bias” might one day suggest that I lived longer from the time of treatment because I was treated early, but perhaps the date of my death was to be the same regardless. I really don’t know at this time. I’ll keep you posted. Or check the obits for my name from time to time.
Another thing I found interesting is what I have called the “breaking of the implied contract.” To the best of my knowledge it goes like this: I (unconsciously I think) assumed that by eating well, keeping my weight down, exercising, taking vitamins, joining meditation groups and that especially because I am I physician helping others with their medical issues, I should somehow be exempt from these problems. They only affect patients (of course not including myself in that group). It affects them, not me. This implied contract assured me that I could live without illness. Of course, I did the regular physical exams, screening colonoscopies, blood work, etc., but that was just backup. The assumption was that since I am in the medical field I should be a spectator, not a player. Surprise! When the implied contract was broken, I felt my body had betrayed me. Interesting my mind would think this way, but there it is.
When I was first diagnosed 18 months ago, the concept of death became more of a reality. It went from being something that happens (perhaps to others only?) in the future to a “in your face buddy!” Life requested a sense of urgency. Though I did not develop a bucket list, I did start to look at projects I had not completed in life, relationships that needed repair, and dreams I needed to either start fulfilling or put away for good. The concept of delayed gratification disappeared and the quest for finding meaning intensified. I wish I could say that I’ve accomplished my goals but it remains a work in progress with no definite answers yet. Despite the sense of urgency, there is a calm about it. When I diagram my position in life, I’ve lived at least 75% of my days, and that’s assuming I have a normal life expectancy. How many shopping days are left? No way to know, so each day is precious now.
From the time I agreed with Dr. Klein to go ahead with a prostatectomy, I had a 4 week waiting period. During this time, I did all I could to improve my chances of healing and get my affairs in order. I worked with a Dr. Mark Renneker from San Francisco to optimize my health. I took a number of supplements he recommended and read a book he suggested called Cancer as a Turning Point. I lost a little weight, exercised, took long walks in the park, and meditated a little longer than usual. I made sure my wife and children knew that I love them and how much they mean to me. After a number of years of doing inner work, I was pleasantly surprised to see that I had no unresolved issues with anybody in my life. That was reassuring. I updated my will and financial documents and made sure that in the unlikely event I did not make it out of the hospital, that all my affairs were in order. Morbid as this might seem to some, I found it quite helpful. It seemed to add some order into my life and help me understand where I am at emotionally.
I have to admit I feel some sense of relief now that my prostate is gone. I know I may not be cured, but I do feel better about it. Do I have any words of wisdom for those in my position prior to surgery? Absolutely! Educate yourself. There is a lot of nonsense on the internet, but there is also some pretty good stuff out there. Teasing it apart can be challenging. Get advice from your doctor and follow it. If you have any doubts, get a second opinion. Make sure that if you have to “pull the trigger,” you feel confident you are making the right decision. My urologic oncologist does open, not robotic, prostatectomies; yet in my mind I was trusting experience over technology. He had over 4000 of these under his belt. Despite having an open prostatectomy, I went home the day after surgery on Tylenol and anti-inflammatories for pain. My hospital roommate who had his surgery done robotically at the same time and date as I did was still in bed as I was waving goodbye to the nurses who so nurturingly took care of me during my stay.
Get support from your loved ones. I can’t imagine going through this without the help of my wife who so lovingly helped me every step of the way. Helping me shower my hurting body and care for my bladder catheter is not something any of us knowingly sign up for. Yet she was always there for me and I am grateful.
Thank you all for traveling with me.