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Opinion: 'My prostate cancer diagnosis whipped up an emotional whirlpool that spun me around'

As part of the Movember campaign, Stephen McIntyre shares his story of diagnosis and treatment for prostate cancer.

Stephen McIntyre

IN THE SUMMER of 2019, one of my brothers was diagnosed with prostate cancer. A few months later, my other brother followed suit.

In February 2020, it was my turn. I was told my cancer was “moderate-to-high volume bilateral Gleason 7 adenocarcinoma.” I didn’t know what that meant. What I did know was that I was 44 years of age, married with four kids under eight. This was not part of my plan.

I’m generally a calm person and a considered decision-maker. But the cancer diagnosis whipped up an emotional whirlpool that spun me around and made it hard to think straight. My goal in this article is to review the stages I went through in the hope that it helps you, or someone you know, to think straight after a prostate cancer diagnosis.

Although it makes me wince to explore this topic publicly, that’s the point of Movember: to risk personal embarrassment for the benefit of someone else. And since I have the facial hair of a small baby, I need a way to contribute that doesn’t involve growing a mo.

Pre-diagnosis

In 2018, I took a PSA blood test as part of a routine health check. PSA is a protein released by the prostate that is a useful indicator of prostate cancer. My reading was below 2.0, within the normal range.

The following year, I visited my GP to see what my brother’s diagnosis meant. Knowing that prostate cancer runs in families, his posture stiffened and he recommended an immediate physical examination and a PSA test. My level had risen to almost 3.0, above the normal range for my age and a steep rise from the year before. There are many benign reasons for a high PSA reading. But as is so often the case in life, insight resides in the trend and not the datapoint. Something was afoot.

Prostate cancer is diagnosed using an invasive procedure called a biopsy. Under local anaesthetic, needles are used to take tissue samples while the man blinks at a blank wall and resolves to be more empathetic next time his wife goes for cervical screening.

Before subjecting me to a biopsy, I was asked to get an MRI. That experience didn’t bother me, but if you get claustrophobic don’t Google it. In any case, the results were indeterminate: PI-RADS 3, another arcane acronym that I researched and quickly forgot. A score of 1 or 2 would put me in the clear while 4 or 5 would be cause for concern. A score of 3 put me on the fence, an untenable place to be perched in light of my family history.

The next step was a Rapid Access Clinic, a full morning of tests followed by a biopsy. The night before the clinic, I honoured a commitment at my alma mater to speak about tech investing and career development. As I sat on a high stool under bright lights in front of an auditorium of students, all I could think about was the biopsy to come in less than 12 hours. It reminded me of the adage, “be kind, for everyone you meet is fighting a battle you know nothing about.”

Diagnosis

Nine days later, I met the urologist to discuss the biopsy results. I didn’t invite my wife, which was a mistake because this was to be an important day for both of us. But I was optimistic that February morning. I had no symptoms. I’d weighed the probabilities and knew what was coming: I’d be told I didn’t have prostate cancer but given my age and family history they’d keep an eye on me.

I was wrong. My mind began to swim when I heard the words “unfortunately, we did find cancerous cells.”

Prostate cancers are graded using a Gleason score from 1 (healthy) to 5 (aggressive). A score of 3+4 means that the most commonly occurring cell pattern is grade 3 and the second most common is grade 4. So 3+4 is better than 4+3, but any combined score of 7 is worrying. Mine was 3+4.

In subsequent written exchanges, I absorbed more details of my predicament: “All 12 biopsy samples have cancer and some have a high percentage replaced by cancer. You have clinically significant disease, and in your age range you have 40+ years of life expectancy to think about. I do not wish to be overdramatic but surgery is the right option and the sooner the better.”

I left the urologist’s rooms in a daze and called my wife. We talked for a long time as I walked back to my office. She was even more shaken than me and I could hear her cry, though she tried to hide it. I remember her saying at one point, “whatever happens, we’ll deal with it.” While we didn’t know what would come next, we knew we’d tackle it together.

Turning point

The stormy winter months leading up to diagnosis were dreadful: I was a reluctant passenger, propelled by events outside my command. But the day of diagnosis marked a turning point. Now that I knew the facts, I reclaimed control. I sensed that my ability to handle myself — to think clearly, act quickly, remain positive — would be important.

I wanted to understand the science, select the right treatment path, tell the people I loved, and get myself in the best possible shape, mentally and physically. I was well up for the challenge!

A friend suggested my positive attitude was an act and encouraged me not to hide my true feelings. My brothers recognised the deeper truth: the worst was now over, all that remained was to get my head in the game. You don’t get to know yourself until you’re tested. I was about to learn something new.

Decision

Prostate cancer is one of the most survivable cancers, a point worth dwelling on if you’ve had a diagnosis. The most common interventions, surgery and radiation, are both highly effective at removing cancers that have been detected early.

One bewildering thing about the disease is that there’s no “right” treatment path: the patient must choose.

They suit different people depending on a variety of factors, including age, fitness, and mentality. While surgery is more invasive, you find out quickly whether the cancer is gone or not. Radiation is less physically demanding, though it involves several months of treatment. Both techniques come with possible side effects that are common, unpleasant, and potentially life-long. The nature of these side-effects makes them even harder to bear for a man in his 40s than 60s, rendering the stakes extraordinarily high for me.

Because intervention comes with such frequent complications, a third option is popular: active surveillance. Rather than crystallising the side-effects by immediate action, the cancer’s progress is monitored with regular PSA tests and biopsies, delaying surgery or radiation until absolutely necessary.

Prostate cancer normally develops slowly, teeing up a classic line from one of my favourite comedies, The Thick of It. A government minister looks out his office window as the much-feared prime ministerial advisor, Malcolm Tucker, drives towards his building. “I don’t know which is worse, watching Malcolm slowly rumble towards you like a prostate cancer or him appearing suddenly out of nowhere like a severe stroke.”

I once heard a Navy SEAL say his first decision under pressure is to determine how long he has to make the decision. I figured I had two weeks. Prostate cancer normally rumbles along like Malcolm Tucker: foul and dangerous but possible to evade if you have the time.

My age made it more likely that the cancer was fast-growing and therefore time-sensitive. And, most important, a Covid tsunami was making its way towards Europe in late February 2020. A prescient friend, who worked in the healthcare system, warned me: “hospitals will start to collapse in April and cancer treatments will be cancelled.”

While I rated my surgeon highly, I didn’t consider any medic infallible. A decision of this import deserved some work of my own, so I pulled together a kind of kitchen cabinet. My brothers were the best support group you could imagine. I sought a second medical opinion, navigating to a urologist in Boston who confirmed everything my own surgeon had said. I spoke to a good friend who is herself a surgeon, albeit in another field. My wife was my daily sounding board.

All the while, I continued with desk research, consuming medical papers, articles, and podcasts, trying to separate the wheat from the mountains of chaff. Importantly, I discovered that most studies of prostate cancer are based on populations of older men. This gave me confidence that my chances of success were higher than the studies suggested.

The final factor in my choice of treatment was mental: for the first time in my life, I found it impossible to compartmentalise. Cancer was relentless. It was on my mind all the time, in part because we had young children and I felt a duty to support them for decades. I had to liberate my brain as much as my body, concluding that bold and immediate action was called for: surgery was the right option for me.

My research confirmed that while prostatectomies are common, their outcomes are not a foregone conclusion — the skill and experience of the surgeon matter. Putting knife to skin is an earthy, physical pursuit. The surgeon’s accumulated hours using the specialised robot are paramount. Morning slots are better than evening. Surgeons are human and humans have good days and bad days. Mine was the most experienced in the country.

Telling our kids

There’s no right or wrong way to parent and no right or wrong way to tell your kids about cancer. I found these principles helpful:

  • Adjust the message by age. I told our kids one to one
  • Reassure them that they can’t catch cancer from you. I never would have thought of this
  • Be specific, no analogies, no idioms. Abstractions confuse. I could point to two brothers who recently had surgery and emerged on the other side
  • Progressive disclosure. Adults eat an apple in one go, kids take a bite every half hour. That’s how they absorb information too. My wife and I spent a lot of time in silence, waiting for questions
  • Don’t make promises you can’t keep. My brothers provided concrete proof that this disease, when caught early, is highly treatable. But cancer is dangerous and surgery carries risk — our older kids deserved to know that.

Surgery

I took the soonest date available and became one of the last patients to be operated upon before Covid cleared the ward and postponed surgeries for months. My family hugged me at the door of the hospital, unable to visit due to lockdown. I was in good spirits. It was an evening slot, which made me laugh.

I’d resolved that I must be at peace with whatever would come when I woke up. By attempting to remove the tumour, they might damage the cobweb of surrounding nerves. In an effort to spare those nerves, they might leave some of the tumour behind, allowing it to multiply once more. My reading of the data told me that these scenarios were in the zone of the possible. My circumstances forced me to play a form of Russian roulette.

Before I went under general anaesthetic, I did indeed feel at peace. What would be, would be. I had done my job — I was fit, strong, positive — and now I trusted the surgeon and his team to do theirs. I thought about my brothers who had already experienced this. Three of us under the knife of the same surgeon within eight months. “Count backwards from ten” was the last thing I heard as I lay on the trolley adjoining the operating theatre. I didn’t get the chance to ask about a family discount.

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Outcome

When I woke up, I felt awful and elated at once. My body was in turmoil — half my insides still asleep after the anaesthetic — but I was overjoyed to be alert and alive. It takes a week or more for a pathologist to analyse the prostate and determine if the cancer is contained within its capsule, implying it has not spread. It takes several more weeks of living to know the extent of nerve damage and possible side effects. Many people report continuous improvement for months or even years.

The pathology results are technically the most important stage of all, though I was too tired to be worried about them. When the pathologist gave me the all-clear, my wife visibly started to relax. The pressure of supporting me — while working herself and handling four kids abruptly at home due to lockdown — was immense. My turning point had come weeks earlier, hers most certainly had not.

I was lucky in so many ways. My big brothers — men who have supported me all my life — provided the decisive early warning. Although I was unusually young to be diagnosed with this disease, my age became a crucial advantage in overcoming it. I’ve gotten to know many men who’ve been less fortunate, requiring ongoing treatment or living with side effects or both.

If you’re worried about prostate cancer, this section should give you hope. I have made a full recovery. I was walking after a few days, back in the gym after six weeks, and my side-effects diminished from manageable to inconsequential not long after that. I take PSA tests twice a year and my readings have all been zero. While I take nothing for granted, it appears I am cancer free.

Recommendations

Early detection saves lives. Take an annual PSA test from age 40 to establish a baseline. If you’re unfortunate enough to be diagnosed with prostate cancer, here are my recommendations:

  • Construct a support group — not too big, not too small. Listen, but don’t make decisions by consensus
  • Trust but verify expert opinion. Your specialist might be correct about everything, but you can’t own a decision to which you don’t contribute. This is especially important if treatment doesn’t go as you hope
  • Your wife/girlfriend/partner is probably finding this even harder than you. Pay attention to others
  • Take care when you tell your kids. You don’t get a second chance and they may remember forever how they felt when you were sick
  • Get fitter. Use all remaining time before treatment to get fitter, whatever your current level. Fitness improves outcomes
  • Stay positive. Prostate cancer is one of the most treatable cancers. You can be positive in the face of adversity without being unrealistic. Surround yourself with people who give you energy, focus on the things you can control, fake it till you make it — whatever works!

Prostate cancer is the second-leading cause of cancer death in men. I have five small scars on my midriff that will always be a visual reminder of it. But they fade a little every day.

Stephen McIntyre lives in Dublin with his wife and four children. He is a partner at the venture capital firm Frontline Ventures. You can support his Movember campaign for prostate cancer awareness here.

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