Support Volunteer Kent spent his career in Navy submarines. He’s been married to the love of his life Erna for more than 62 years, has two children and five grandchildren. He recently attended his first-ever virtual cocktail hour. He’s also a 15-year survivor of aggressive, non-metastatic, castration resistant prostate cancer.
Kent was first diagnosed in 2004, with a Gleason score of 9. He went through external radiation and androgen deprivation therapy. After two years of treatment, his cancer was undetectable.
He advises patients to find a medical team that they can trust, even if that means finding someone new. “Almost everyone I talk to is over 65. If insurance won’t, Medicare will pay for it. They will pay for people to get second opinions and change doctors. Confidence in your doctors matters. I’m forever grateful to my outstanding team at Mass General.”
Personal teams matter too. “Always bring your spouse or your partner to your appointments if possible. A second pair of ears is important. My wife has been with me at every single appointment for the past 15 years except for my last one, and that’s only because Mass General is closed to all visitors due to the pandemic.”
After more than five years in remission, Kent’s quarterly scans revealed new “hot spots” beginning to pop up and rising PSA levels. His doctor continued “watchful waiting” for as long as possible and then began a new course of meds and androgen deprivation therapy. Unfortunately, the numbers kept climbing.
It was then Kent came across a story in CURE magazine that mentioned a clinical trial for a drug targeting his very diagnosis. He brought it to his oncologist. Although his oncologist didn’t have any patients in the trial, he helped Kent find out more and worked through the pros and cons of enrollment. Like many of Cancer Hope Network’s survivor volunteers, Kent opted in. (CHN volunteers have participated in clinical trials at more than twice the national average rate.)
For someone whose life had been committed to service and with current treatments providing little relief, it was an easy decision. “In my case, it wasn’t so much why as why not? The meds I was taking weren’t working. My PSA was continuing to rise. My hotspots were continuing to pop up. According to my oncologist, until recently, you just had to wait for the cancer to metastasize. Sitting around waiting for it to metastasize is a lousy option. That was the catalyst for my getting involved. It may not help me, but it might help someone else. I jumped in wholeheartedly, and my whole family was on board.”
Kent was lucky. Although many trial participants experienced side effects, his were so minimal that he began to wonder if he was part of the group receiving the placebo. Luckily for him, near-miraculous results soon became evident. The hot spots in his pelvic area began shrinking and after a few months, disappeared completely. Today, the drug he helped pioneer has received FDA approval and continues to provide good results for him. Kent and his wife recently took part in the global rollout of the drug via video conference. (“Certainly the first and only time in our lives we’ll be on the air live speaking around the world. It was a lot of fun.”)
Through it all, Kent has maintained what he calls his PMA – Positive Mental Attitude. It’s something he shared years ago as a mentor for American Cancer Society, through his time volunteering at Mass General and today as a volunteer for Cancer Hope Network.
“I don’t mean that I’m a Pollyanna, but I do tend to see the bright side of things. I was born with PMA. It’s in my DNA. I’ve always been a person who sees the jar as more half full than half empty. We can work these things out. My medical team is tickled that I’ve had such good success, but we recognize that it might not continue. So we have a plan. But that’s downstream.”
His treatment continues, along with the paperwork that comes from continued tracking of his trial drug experience. He’s continues to watch his diet and get regular exercise. “After 15 and a half years, I haven’t fully recovered. I just had scans last week. Even though I’m not cured, I’m still trying to be positive about it. The idea is to prevent or delay metastasis. It’s important to stay on top of this, to recognize that my cancer journey goes on. I’ll keep doing what I’m doing and following the doctor’s orders. As I joke to my wife, I may not be smart, but at least I’m obedient.”
Kent’s diagnosis came shortly after his retirement, which provided an opportunity. “I don’t want my life to be defined by my prostate cancer. I wanted to make prostate cancer awareness and advocacy a part of my life. Volunteering is an activity that makes sense. I could be out playing golf – if I played golf – but that doesn’t help anyone. If I can help other people in any sort of way, I will do that.”
Help he has – speaking to several hundred men throughout the years.
“People I’ve talked to want to talk to a person who has walked the walk. They’re getting great advice from their oncologist, urologist, nurse practitioner, staff. But the professionals are coming at it from a different direction. Getting information from someone who is walking or has walked the walk makes a big difference. I think that’s why CHN does such a service to people by teaming people up to provide a real life perspective. As a volunteer I can’t give medical advice, but people like to hear from someone who has been down that same road.”