“Genetic testing has given me the gift of life and has given my daughters lifesaving knowledge”

My name is Graham Knope.  I’m 64 years old.  I’m married to my wife, Carol, for 21 years and have three adult daughters (Carol’s stepdaughters), three sons-in-law and a wonderful little grandson. 

Like many men my age, my cancer story begins with a PSA number.  From four in 2020, to 10 in 2021, to 18 in 2022, and then to 38 in Feb 2023.  Unfortunately, early biopsies didn’t reveal cancer, so I assumed I just had non-cancer-related, high PSA. 

But on March 20^th, 2023, after my third biopsy, I received a phone call from my doctor.  When I answered, he said those three dreaded words: “You have cancer”.  In addition, he told me my cancer was aggressive, measuring 9/10 on the Gleason score.   

I would need follow-up tests, including a CT scan and bone scan, to see if there was any further spread.  And that would be followed by treatment, surgery and maybe radiation.  After the shock wore off, the fear set in.

My wife and I set out two immediate goals:

1. Get the necessary scans as soon as possible
2. Get my care transferred to Princess Margaret Cancer Centre
   

We were able arrange for a CT scan right away and my bone scan came through fairly quickly as well.    

But my research also suggested that I would benefit from a PSMA PET CT Scan—and this wasn’t available to me.  So, I decided to go to Buffalo to an imaging facility and pay out of pocket.  Although expensive, the PET scan revealed what the CT scan did not – there was localized spread to my pelvic lymph nodes.  Not good news. 

It was at this point I had the good fortune of being introduced to Dr. Neil Fleshner.  Dr. Fleshner met with Carol and me, explained my condition and outlined options.  He told us about a new, cutting-edge, prostate cancer trial (GUNS trial) that he was involved in.  Through genetic testing, they would be able to determine the appropriate cancer treatment protocol for me.  They had designed four different treatment groups depending on the results of the genetic tests. 

My answer to him was clear: “sign me up.”

At this point, we met a genetics counsellor named Emily.  In her caring way, she explained what was involved in the trial, including more detail about the four treatment groups. 

One group was for BRCA 2 positive patients, but she said that was statistically unlikely for me.  But unlikely happened and I tested positive for the BRCA 2 gene mutation, which began a new chapter; one that would involve my whole family. 

As promised, the genetic testing guided my treatment plan.  For six months, Abiraterone, Niraparib and Prednisone became my daily regimen, while I received ongoing care by the knowledgeable team at Princess Margaret. Radical prostatectomy surgery took place in November 2023.  They removed my prostate and several lymph nodes.  After two years of testing, diagnosis, treatment, surgery and recovery, I feel more like myself again.

Follow ups continue to this day.  I’ve had regular blood work and scans and calls with Dr. Fleshner, which have been informative and reassuring.  And because of my genetic testing, I will continue to be monitored for this and other cancers going forward.  The testing was a gift that saved my life. 

But more than that, the knowledge has also been a lifesaving gift to my family.   Because of my genetic variant, my three adult daughters have been tested. While we hoped and prayed for three negatives, it wasn’t to be: two of the three carry this gene and have been enrolled in Princess Margaret’s monitoring program for breast and ovarian cancers.  It has been a lot for them and our family to absorb, and they will both have serious decisions to make going forward.  But knowledge is power, and early detection saves lives. 

Genetic testing has given me the gift of life and, perhaps even more meaningfully, it has given my daughters lifesaving knowledge, support and care. 

I am deeply grateful for the opportunity to have been genetically tested.  I am grateful for the incredible world-class care and treatment I have received.  I am grateful that my daughters are now also receiving lifesaving care.  And I am grateful that this data will be part of the Marathon of Hope Cancer Centre’s Gold Cohort, meaning that it will help guide diagnosis and treatment for years to come.