Karen and Roger live and work in the Washington, DC metro area. Karen’s bladder cancer diagnosis came in 2010; Roger’s in 2016. Before that, they were both blessed with good health and have always been very busy with family and friends. They raised two sons and had always enjoyed intimate meals with friends.
Before his diagnosis, Roger indicated he was something of a gym rat, which he believes prepared him well for his recent cystectomy and neobladder construction. “I developed a taste for weight training and aerobic exercise at an early age. When I was young, I participated in various sports and training came with the territory. I remained active all through my sons’ sporting years, and I simply kept up my habits throughout my fifties.”
Roger’s first diagnostic CT urogram was recommended by a close family friend, a community-based urologist, in response to an episode of spontaneous hematuria that he experienced following a run in a local park. His friend’s urology practice was the same medical group that diagnosed and first treated his wife Karen’s bladder cancer in 2010. Karen has undergone an intravaginal sonogram, BCG infusion, mitomycin-c infusion, and occasional surgery to remove recurring bladder tumors. “Because of my wife’s history with the practice and our family connection with one of the group’s partners my initial CT was performed promptly. I was utterly shocked by the diagnosis. I’ve been fit and healthy my entire life, I’ve never smoked, and I never dreamed that bladder cancer would strike twice in the same family.”
Roger underwent a TURBT (Transurethral Resection of Bladder Tumor), at an NCI center within weeks. He had high-grade T2 urothelial carcinoma. His oncologist advised him to have adjuvant chemotherapy before a follow-on radical cystectomy and urinary diversion. “Because of my prior history as a caregiver for my wife I was familiar with the disease and with the various diversion options. My wife’s and my awareness enabled us to optimize our search for a surgeon because we didn’t need as much time to learn about the disease or diversion options. We visited three high-volume centers on an exhausting series of trips before selecting the surgeon and center that best fit our needs. I received excellent care from a skilled surgeon at a major center three hours from my home. I had a small bowel obstruction (SBO), two-and-a-half weeks after my surgery. I was admitted to my local hospital for four nights to relieve it. I recovered from the SBO, and I’m progressing nicely with my recovery from the cystectomy and neobladder surgery.” Roger recovered remarkably well from surgery. “Since my diagnosis, I have joked that in a way I’ve been training for my bladder surgery my whole life.”
Karen’s initial tumor removal took place locally in 2010 but her disease was persistent, and she eventually elected to go to Johns Hopkins for continuing care. They believe there is no substitute for obtaining treatment from a provider who sees many – often complicated – cases. In Roger’s case, they visited three different institutions before settling on Penn Medicine. Neither Karen nor Roger had obvious risk factors for bladder cancer. Neither of them smoked. Karen is an oncology nurse, still practicing, and her surgeon speculated that her early-career exposure to chemotherapy drugs might have contributed to her disease. In Roger’s case, his underlying cause of the disease is less clear. Perhaps it was just bad luck.
Since her initial year-long treatment Karen has been fortunate to stay mostly free of disease. Her periodic surveillance exams and treatments keep her healthy, and her bladder remains intact. She leads an active life that doesn’t differ from her life before bladder cancer. Roger is two months past his surgery and still recovering, but he is cancer-free and, with Karen’s help and support, he expects to resume all of his normal activities. Roger’s working again, and he’s already doing some light exercise.
The couple first encountered BCAN when Karen entered treatment in 2010. Roger and Karen participated in a BCAN walk, they attended the first BCAN Summit in Rockville. The survivor friends Roger met through BCAN have played a vital role in his emotional recovery.
When asked what advice he would give others who are new to the bladder cancer journey, Roger said “Break the journey into stages and simple steps. Don’t leap ahead anticipating all the worst-case scenarios. Bladder cancer is so survivable for so many of us. Reach out to others and especially get connected to other like-minded survivors. Their advice and support are invaluable. Research your disease. And for goodness sake take prompt action and obtain care from an institution with extensive experience with your disease.”
“As we’ve fought this dreadful disease these last six-plus years Karen and I have become an effective team and have learned so much from each other about how to cope – and how to live. We hope to keep learning from and leaning on each other for many, many more years.”
2017 Update: BCAN was saddened to learn Roger’s cancer returned. A BCAN Survivor 2 Survivor volunteer patient advocate, Roger’s passing has left our community with a deep sense of sadness, and steeled our determination to continue to raise awareness and search for a cure.
2019 Update: Karen participated in Your Cancer Game Plan’s “With Love, Me” campaign. “With Love, Me” features a series of heartfelt letters written by caregivers and cancer survivors to their newly diagnosed selves and other caregivers touching upon what they wish they had known when they were first diagnosed/providing care. There’s great power in sharing stories, and when it comes to facing cancer, patients and caregivers have found hearing from others affected by cancer may help. You can watch Karen’s video here.