John McPetrie – The lighter side of prostate cancer

John McPetrie shares his humorous views of the side effects of prostate cancer treatment.

John (66) lives in Constantia, Cape Town, with his wife, Sue. They have two adult sons, having lost their eldest four years ago. 

REGULAR PSA SCREENINGS 

John was diagnosed with Stage 3b prostate cancer in late 2018 despite regular PSA testing for 22 years. “After many years of a relatively high PSA (it went up to almost 11), it began to drop; fairly unexpectedly and quite rapidly. 

It fell to 4,02 in mid-2017. My then urologist thought that whatever had caused the high reading had disappeared. But evidently not, as I learned later from my oncologist that a falling PSA can indicate advanced cancer which can inhibit the prostate’s ability to generate PSA. Had I known this back then, I might’ve had the prostatectomy years earlier. To make matters worse, my cancer turned out to be an aggressive Gleason 8,” John explains. 

The Gleason score is a way of describing prostate cancer, based on how abnormal the cancer cells in a biopsy sample look under a microscope and how quickly they’re likely to grow and spread.

FACING TREATMENT 

John had a radical prostatectomy by robotic procedure. Because MRI scans had indicated that the cancer had come out of the prostate capsule and invaded nearby tissue, the operation required a great deal of care to ensure that all the cancer was removed. As it turned out, he lost ¾ of his bilateral nerves; those controlling the erection function and one of his seminal vesicles. 

Although the surgeon had to ‘go to the margins’, he was confident that he had removed the cancer. 

SEEING THE LIGHTER SIDE 

“The immediate and perhaps permanent consequence was erectile dysfunction. Immediately post-op, I was given little blue tablets to stimulate erectile function but having read the side effects, I didn’t think it was worth it. In ongoing chats with Sue, we decided that if we tried anything, it wouldn’t be chemical,” John says. “There are interesting options!”

John also suffered incontinence. “I needed to wear pads for a while; I called them ‘nappies’. But, I wanted to get back on the road asap and that meant running with a ‘nappy’. In the early days, they leaked and accidents happened. Once I was struggling to hold my ‘nappy’ in my running shorts and some guys asked if I was okay. I said that my ‘nappy’ was coming adrift. They canned themselves and then we had a chat about prostate cancer. Once you’ve got your mind around the fact that you’ve avoided a death sentence, the hassle of pads is no big deal. Nevertheless, pads are uncomfortable and a real pain in the groin! Much better to practice control, until you’ve got it!” 

FURTHER TREATMENT

Despite the hope that the cancer had been eradicated, John’s first post-op PSA test reading was above the desired 0,02, suggesting that something sinister remained despite the extent of the operation, and further treatment was required. This involved 34 bouts of radiation and a three-monthly LHRH agonist. 

John adds, “With chemical castration comes the cessation of testosterone production by the testes, which shrink. Libido immediately disappears, along with the ability to have an erection (although the operation had done a pretty good of that already). I jokingly talk of my software (the libido), hardware (the nerves) and firmware (the erection) all disappearing at once. And everything shrinks; the testes turn into little raisins. Nothing fits the way it did. It takes some getting used to!” 

“And then the hot flushes; manageable by day if you’ve got access to a fan, but they interfere with sleep. Very badly! Fortunately, my energy levels, which I was warned were likely to dip, haven’t. Although my strength certainly has. Exercise becomes difficult and I’ve experienced a real fall in performance.” 

SIDE EFFECTS 

The consequences of radiation have been particularly hard on both the anal sphincter and the only remaining urethral sphincter. “Both get hammered because they’re so close to the prostate bed and have been weakened, to the extent that both run the risk of leaking. One must be careful!” 

John says he doesn’t recall his oncologist specifically detailing the many other side effects, besides hot flushes, but, “I was aware that hormone therapy came with its own risks. A fellow sufferer suggested I read Dr Patrick Walsh’s Guide to Surviving Prostate Cancer and that certainly spelt out the risks. But I was told, ‘Keep exercising and try not to lose muscle tone or mass’. Walsh’s book warns that hormone treatment ‘will try turn you into a tub of butter’. So, even though exercising becomes onerous, keep pushing.”

Given the risks spoken of in the book, John was surprised that additional specific check-ups were not routine. In consequence, he’s asked his oncologist about the many side effects beyond CVD (like stroke risk, triglyceride increase, and colorectal cancer). He’s confident these are being considered and will be investigated if necessary.  

STARTING A SUPPORT GROUP 

Even though John has had a rough time with side effects, he has been blessed to see the lighter side of it and has met wonderful people. Along with his own desire to understand his situation better, this motivated him to run a ‘special interest group’ for others, like him, who ‘require additional treatment’ (within a bigger group of those who’ve had a radical prostatectomy). 

“I sought to meet the others, to create a sense of ‘we are in this together, let’s share the experience’. The guys in the bigger group are worrying about recovering from their war experiences; we’re still very much at the front line.”

For more info on prostate cancer, visit www.prostate-ca.co.za

MEET OUR EDITOR – Laurelle Williams

Laurelle is the Editor at Word for Word Media and graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She have a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Write me: [email protected]