The Emotional Side of Prostate Cancer
One in six American men will receive a diagnosis of prostate cancer in their lifetime—but that statistic is meaningless until you are the one diagnosed with prostate cancer. Because prostate cancer is a “silent disease” (only producing symptoms in its advanced stages) most men will be shocked when they receive the news.
I was 58 and feeling on top on the world when I went in to my urologist for a refill on a prescription. The urologist I saw that day was not my regular doctor. When he said he wanted to perform a prostate exam before he wrote me a refill I told him it wasn’t necessary as I’d had my prostate examined within the last eight months. He insisted. I was ticked off that it was necessary for me to “assume the position” before I could get my prescription refilled.
My world turned upside down when I heard the words: “I’m sorry to tell you this, but I felt a suspicious lump and we’ll need to schedule a biopsy.” The shift from feeling healthy one minute to the new reality that I could be facing a life-threatening disease was an emotional and psychological shock.
Many articles identify the stages a person goes through after receiving a diagnosis of cancer. Personally I don’t find the stage model useful. I believe it’s more productive to explore the attitudes, beliefs, assumptions, and experiences of the person receiving the diagnosis of cancer.
Unfortunately, most men newly diagnosed with prostate cancer don’t get the opportunity to process their past experiences and associations with cancer, but they should as these experiences will affect how they take the news.
I’ve personally seen too many people die from cancer without adequate pain control—these images are burned into my memory. So when I heard the news, I felt raw terror. Three words with powerful imagery came to mind my mind: pain, suffering, and death. To say I was terrified would be an understatement.
The way it was handled was in stark contrast to other physician interactions I have had: When I was diagnosed with a hernia, or laterappendicitis, my doctor told me exactly how it would be treated. After receiving the diagnosis of prostate cancer I was asked how I’d like to treat this disease. I thought this was a bad joke: I knew absolutely nothing about prostate cancer, so why was I making this life or death decision?
I’ve lived long enough to know I don’t make my best decisions when I’m terrified and well into the process of losing my rational mind. I spent nights wide awake thinking of prostate cells constantly multiplying in my body with one diabolical goal in mind—to kill me as soon as possible. It didn’t matter how much I tried to research this disease; everything I read was processed through the filters of fear, pain, suffering, and death. It was during this time of emotional upheaval that I had to make one of the most important and life-altering decisions of my life.
It doesn’t take a multimillion dollar study to figure out why too many men are choosing unnecessarily aggressive modalities to treat their prostate cancer—they are choosing based on their fears rather than the facts about their specific form of cancer.
In an effort to protect men from making a wrong treatment decision, the US Preventive Task Force came out against prostate-specific antigen (PSA) testing, concluding the test does more harm than good. The idea was that knowing you had prostate cancer would lead men to seek out overly aggressive treatment options.
From my perspective this recommendation makes as much sense as permanently grounding all planes to prevent any future midair collisions. There is no justifiable reason to keep men in the dark and ignorant about their prostate cancer.
Making informed decisions
I believe insurance companies could save millions of dollars every year if they’d provide men newly diagnosed with prostate cancer three one-hour sessions with medical professionals. The first session would help men (and their loved ones) process their past experiences with cancer with a goal of helping men understand the word cancer does not mean a death sentence. Another goal of the first session would be to help them understand that in many cases prostate cancer does not require aggressive treatment.
The second session would be dedicated to helping men and their loved ones understand the specifics of their diagnosis and whether aggressive treatment is warranted. New tests, like the Mi-Prostate Score (MiPS) test from the University of Michigan, are giving more information that is very helpful in making this decision. The MiPS test measures minute fragments of RNA—it improves the standard PSA blood test because it increases a doctor’s ability to differentiate between high risk and low risk prostate tumors. (This test was not available when I was diagnosed with cancer.)
The goal in session two would be to provide the best information available to help men and their loved ones understand the aggressive or nonaggressive nature of each man’s prostate cancer.
The third and final session would be a discussion regarding the appropriate treatment options based on the aggressiveness of the cancer. I’m certain the overwhelming majority of men would be capable of making a rational decision based on facts rather than fear if a three-session model of decision making was offered.
Unfortunately this isn’t what happens when men are diagnosed with cancer, and too many men make their treatment decisions based on their fear of cancer and dying.
Life without a prostate
All too often their treatment of choice is robotic surgery, a heavily marketed option. My website, whereisyourprostate.com, polled men who chose surgery. Though not a scientific poll, it does provide useful information. Only 25 percent of the 250 men who participated in this poll felt prepared prior to surgery. Therefore it’s not surprising to me that 39 percent of the men polled would choose not to have surgery again after living life without their prostate. It’s my belief that too many men are living with buyer’s remorse after robotic surgery. Unfortunately, buyer’s remorse can turn into a lifelong debilitating state of mind. Here are quotes from three men suffering from life without a prostate:
It’s become apparent that, even in the best-case scenario, sex wasn’t going to be anywhere close to what it was before. Even when we do “other methods,” and manage sex in some form, I just feel like a freak afterwards. I feel like I’m not even a man anymore. I wish now that I had never let anyone touch me—I would have preferred to just let the cancer kill me instead.
The physical pain from the surgery is gone but everything else is deteriorating. There is not a minute that I don’t regret my decision and prefer to just evaporate. There is no denying it; I am now a freak. I don’t respect myself and, in all honesty, I don’t know how others would respect me either.
I wish I never let them talk me into having it removed. My life has changed and just keeps getting worse. I underwent a radical prostatectomy, and it was the worst decision I ever made. Two years later I still suffer from the side effects of the surgery. My life has changed forever. I’ll never be the same again. I am in a deep depression and forever will be.
I count myself as one of the men who based my treatment decision on my fears about cancer. I also fell hook, line, and sinker for robotic surgery. I watched too many internet ads featuring men cherry-picked for advertising purposes. They testified to how quickly their lives returned to normal, just a few months after surgery. Some men experience this, but far too many men believe their lives were permanently damaged and regret their decision to have their prostate removed.
Even though my decision regarding surgery was based upon fear, there were also medically sound reasons I chose surgery as my treatment option. That said, my road to recovery and adjustment to life without a prostate was much more difficult than I expected. I was totally unprepared for the physical, emotional, and relational impact of living without my prostate. It’s been a difficult three-year journey, but I’m very grateful I don’t suffer from buyer’s remorse.
To every man diagnosed with cancer, my advice is to get all the information available about your specific cancer. Get support to deal with your fears. Speak with professionals in the field. Go online to chat with men to find out what life is like two to five years after treatment. Then make the best decision you can based on your diagnosis, the information you obtained about treatment, and the consequences of that treatment years down the road.
Rick Redner is the author of I Left My Prostate in San Francisco—Where’s Yours? Coping With The Emotional, Relational, Sexual, and Spiritual Aspects of Prostate Cancer. You can visit him online at whereisyourprostate.com.