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Jack W. - You either have cancer or you don't

I’m a physician; I have experience in the private and public healthcare sectors; I have nearly fifteen years’ experience as a CEO. None of this prepared me for being diagnosed with prostate cancer.

I had my first PSA test at 43 and the results were fine. My wife encouraged me to go regularly and have my PSA test done. As a professional in the field, I knew that the evidence wasn’t in support of regular PSA testing. To my knowledge, I had no family history and no risk factors.

My wife finally convinced me to get my second PSA test at the age of 47. The test results came back and my PSA level was elevated. I was struck with disbelief. ‘This can’t be right’, I thought, ‘There’s got to be a lab error’.  A biopsy later confirmed that the elevated PSA levels were a result of prostate cancer.

I felt victimized- I didn’t smoke, I was healthy, I didn’t deserve this.

I explored all of my treatment options. I even went down to the States to get a second opinion, and to see what else might be available. My research confirmed what I already knew – the best place for me was at the Princess Margaret Hospital. The more information I had, the more empowered I felt to be making the best decisions. I also learnt that I had to be my own advocate – had I not, I feel like my course of treatment would have been very different.

The decision making process essentially boiled down to the fact that I was a young man with potentially another 40 years of life to live. Because of this, I advocated for an aggressive form of treatment. Within 7 weeks of my diagnosis, I had a radical prostatectomy, followed by an unpleasant 6 weeks of recuperation at home.  Three months after surgery, I underwent radiation therapy. I wanted to maximize my chances of cure, or at least extended life expectancy.

During the course of my treatment, I learnt that my father had an elevated PSA number but had never been investigated further. I encouraged him to get a biopsy and he too was diagnosed with prostate cancer. At the time of my diagnosis, I had no ‘known’ family history of the disease – it’s not often a son is diagnosed before their father.

One of the challenges with my diagnosis was that I didn’t have a peer support group. The support groups I found were composed of men in their 60s, 70s, and 80s. On top of that, because of my background in the health sector, I felt like a very isolated case.

I selectively shared my diagnosis. I continued to work throughout my radiation treatments, so I needed to share information with my management team. I also learned that it was possible to overwhelm your family – my spouse, my parents. I was very conscious of presenting a brave face to others and I was able to compartmentalize what was going on; this also meant that I haven’t fully accepted my diagnosis yet.  

One of the most important resources for me has been psychological counselling. I had never been to a psychologist before this, but I am grateful for his help. Doctors are busy, and they don’t have a lot of time to help you work through the emotional impacts of a diagnosis; my psychologist was able to help me cope. Being diagnosed with prostate cancer was disorienting. I was used to being the clinician, the healthcare provider, the one in charge. I was used to helping sick people get better. To be on the other end of that was surreal. Facing my own mortality was, and continues to be, difficult. There have been positive impacts as well.  I’ve become more empathetic towards my patients – it’s not an academic construct anymore. I can now relate to major health problems and to being a patient.

Through my recovery, I have suffered some blows to my self-esteem. I worried about being incontinent, though I eventually regained control.  I still suffer from a lack of libido and erectile dysfunction. I never thought I would be impotent at 50. At the Princess Margaret Hospital, they teach you how to provide yourself with an injection to achieve an erection.  Holding that needle in my hand for the first time, the reality of what it represented hit me like a ton of bricks. I was struck with an overwhelming sense of impending doom. It wasn’t the needle itself, but what it represented to me – what it meant for my life. Ultimately, the biggest challenge in my recovery has been what’s going on inside my head.

Since my treatment, I’ve spent more time exercising and have become more conscious of my health and my diet. I am trying to provide my body with as much support as I can to beat this disease. Now, I get my PSA levels checked every 3 months. I feel like I’ve come a long way since I was initially diagnosed – but there is still that sense of uncertainty … and living with uncertainty isn’t my strong suit.

I am slowly learning to cope with my new reality. I know that nobody has a guaranteed run-time in life. I find that I am very conscious of my work-life balance now, and the importance of family and friends. I’m also acutely aware of my own horizon – maybe 10 years? Maybe less, maybe more. Who knows? Regardless, I am grateful for every day and whatever time I have left.  

I write this note as I have a urinary catheter in my penis. And another tube sticking out my bladder. I have developed an urethral stricture secondary to my prostatectomy and radiation treatment. This is the “gift” that keeps on giving.

Because of prostate cancer, I learnt, first-hand, the difference between evidence-based recommendations and real life. I’m a healthcare professional; I understand the risk of unnecessary interventions. But on a personal level, I’m an advocate for regular PSA screening. There’s a big difference between population-based evidence and cost containment, and what’s best for the individual patient and his family. The odds aren’t high, but you can get struck by lightning. I was. I sure wish I hadn’t waited four years between screening PSA tests.

Get tested and establish your baseline PSA early. Pay your thirty bucks. At the very least, make an informed decision about PSA screening. The odds are that everything will be just fine. But some of us draw a short straw.

Don’t necessarily accept a large, population-based study as being relevant to you and your particular situation.

As I learned the hard way, you either have cancer or you don`t.

Some names and identifying details have been changed to protect the privacy of the individual(s) in this story.

Relevant Links:
Get more information about the PSA test
Learn more about prostate cancer risk factors
Find out what's happening during Prostate Cancer Awareness Month
Prostate Cancer Canada Releases New Recommendations

Prostate Cancer Canada's vision is to be a global leader in the fight against prostate cancer. Your support will help us achieve this ambitious goal.

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