You may not realize it, but your family’s story may save lives.
When you receive a prostate cancer diagnosis, it’s a slap in the face. You must relinquish some control over your life and place your trust in others — medical advisers, caregivers, loved ones — and, yes, your brothers on the path before you. It’s not the fraternity you sought to pledge; but once you are in it, you realize it’s a vast community and your story can save lives. Everyone affected by prostate cancer needs to become a storyteller.
Women Talk — Men Don’t
As a general rule, women talk about their feelings, their bodies, their breasts, and their breast cancer. Generally speaking, men don’t talk about their feelings openly or their bodies – unless it’s an old athletic injury they wear as a badge of honor. But don’t expect men to talk about their private parts, especially their prostate. So, how do we tackle the need for increased awareness about this male, hidden organ and the prostate cancer that 1 in 9 men will experience in their lifetime and kills thousands each year? We talk about it, we get men to talk about it , and together our stories save lives. It’s that simple. So, here we go.
My Brother Jim – My Husband Bill
My brother, Jim, is a natural storyteller. He entertains many and embellishes with great impersonations, whether he’s in a clubhouse, a duck blind, a ski lodge, or a fishing boat. But there is one story he tells straight and that’s his cancer diagnosis. He was diagnosed with cancer in the fall of 2014, had his prostate removed and is now doing fine. As an engineer, he was comfortable with the concept of robotic surgery, and he had the benefit of being married to a medical professional with a background in oncology.
My husband, Bill Brennan, was not as lucky. He was diagnosed exactly 12 months later but too late to have his prostate removed, and he succumbed to a genetic mutation and (mCRPC*) metastatic castration resistant prostate cancer within 24 months. Bill was an extremely optimistic guy; and after he learned he had an enlarged prostate, he got checked every six months and went on with life. We had no idea he was a low-emitter of PSA, which gave us and his doctors a false sense of security. Also, his tumor was not palpable during routine physicals because it was located too high within the prostate. In the spring of 2015, he received a green light at his physical, and his doctor told him he’d see him in the fall. By late summer, he found blood in his urine and went to his doctor the next day. His PSA had risen to a 4 – yes, I said 4. His tumor had invaded the tissue between the prostate and the bladder, and he was ineligible for surgery. That placed him on a fast track for chemical castration, radiation and finally chemotherapy. He was the second Brennan brother to die, but no one mentioned “family history”.
The Kelly Brothers
After Bill’s diagnosis in 2015, my brother told us the story of his golf partners, the Kelly brothers. Sean and Tim Kelly’s father had died from prostate cancer.
“Tim and I were getting tested almost annually for PSA, in my case since I was age 40, due to my father dying from PC and catching it too late,” said Sean.
At Tim’s 2014 checkup, his PSA was only 1.0, and because it was so low, it was not checked in 2015. At the June 2016 checkup, Tim’s PSA had reached 60.
“The numbers were not a typo; they were the truth,” said Sean. “The cancer had already spread from the pelvis up to his shoulders. He had mCRPC in a big way.”
With their father’s death in mind, Tim was experiencing shock and trauma, but he shared his full story of the diagnosis with Sean.
“I’m sure that was Tim’s way of saying take care of yourself, and I immediately started to think there must be a way to get out in front of this thing,” said Sean. “I just knew it was a matter of time for me.”
Tim referred Sean, who was symptom-free, to his doctor who understood their family history and immediately ordered a biopsy, which revealed early cancer.
“Two out of the twelve were hits for prostate cancer; not much for most patients diagnosed with PC,” said Sean. “Most would have probably done some watchful waiting, but my doctor recommended surgery. At every follow up visit, I thank him for saving my life.”
The Kelly brothers knew the value of a good story, and over the years they told theirs repeatedly to educate and save other families from their plight. Sadly, Tim passed away several weeks ago; but in addition to his brother’s life and countless others, Tim saved one of the Brennan brothers with his story.
The Brennan Brothers
When my brother, Jim, repeated the Kelly’s family story to us, it struck close to home. The same year my brother was diagnosed, Bill’s brother, Steve, had died of bladder cancer that had invaded the prostate. No one in Bill’s family linked Steve’s diagnosis to their sister who had been diagnosed earlier with breast cancer, their father who had died of throat cancer, or their mother of lung cancer.
There was family speculation those cancers could have been caused by smoking. And that’s where their analysis ended. My husband, however, had never smoked. He did serve in the U.S. Army as an officer in Vietnam during the time Agent Orange was sprayed, but we didn’t know about that connection with prostate cancer until later. If Steve or his doctor had explored the Brennan family’s cancer pattern, Bill might have had the knowledge of a genetic mutation, a heightened awareness with screenings, and ultimately the benefit of early detection.
That’s when our thoughts turned to the youngest Brennan brother, Terry. It turned out he also was a low PSA emitter and appeared symptom free. We repeated the Kelly brothers’ story to him and his wife more than once, and urged Terry to get tested. Terry’s PSA reached a 7 at one point but then went back to a 4, and his doctor was reluctant to order a biopsy until he heard “family history.” And like Sean, Terry was diagnosed, and had the benefit of early detection. He had his prostate removed the day after my husband’s funeral, and he has been doing fine these last two years.
“Family History” and Genetic Testing
During my husband’s radiation treatments in the spring of 2016, I learned that AstraZeneca was holding a “Lunch and Learn” genetics cancer seminar at the UC Davis Cancer Center where Bill was being treated. I was intrigued, and by the time the session was over, my suspicions were confirmed. It was clear Bill’s family history presented an opportunity for genetic testing that could save other lives in his large family, including our children, and perhaps provide clues for his own treatment.
Bill’s DNA test revealed that he carried a “genetic variant of unclear significance in the CHEK2 gene.” Last April, the geneticist contacted me to say the lab had “received more information which allowed them to confirm that this genetic variant is likely pathogenic, and his test results are now considered positive.” That means over 90% positive for cancer.
“Tim discovered he had the BRCA mutation and started taking a trial drug, olaparib or Lynparza, in early July 2019, but it was too little, too late,” said Sean. “I did the genetic testing, and I did not have any red flags at all. Yet, I still had early prostate cancer.”
What do You do with Genetic Information if your Husband has Died?
You make sure it’s shared with his entire family because each one of them has a 50% risk to carry the same mutation and pass it on to the next generation. You urge them to get genetic testing. And you keep telling these prostate cancer stories over and over again. It doesn’t have to be a death sentence. New drugs, tests and treatments are being introduced yearly.
“Today, I am continually on my other two brothers’ cases to keep getting checked with whatever new and old diagnostic tools are available,” said Sean Kelly.
Since it was unclear if Bill’s mutation was of maternal or paternal origin, it was suggested that relatives on both sides of his family be informed. With testing and counseling, family members can better understand their cancer risks and plan for screenings and medical management. I provided the addresses, and the geneticist sent a letter with the family history diagram to the adult children (over 18) and Bill’s siblings. With the letter each person can request a referral from their primary care provider to see a cancer genetic counselor who can offer them very simple testing for the CHEK2 mutation.
Our Family Stories Have the Power to Save Lives
There you have it — three families, six stories, and six different outcomes. Each one is powerful because it has the value to save or improve more lives – but only if the stories are told and retold. Become a life saver. Do you have a story you need to tell?