Incontinence was a major problem for me 15 years ago. Guiding my cousins around the National Mall in Washington D.C. one day, I had to find a restroom for urinary relief several times. Later, we remembered that my father had developed incontinence from benign prostatic hypertrophy or BPH—overgrowth of the prostate—in his 70s. It seemed reasonable that I had inherited his misfortune.
A few days later, my primary care physicians confirmed I was developing an advanced case of BPH. She referred me to a urologist for consideration of how to keep prostate tissue from expanding into my bladder.
Without delay, the urologist conducted a thorough examination then initiated what became a month-long discussion. We talked about what he found, what therapy options were most likely, and, because of intensely personal concerns about sexual functions, how to engage me in making therapy decisions. In brief, giving me the last word on treatment choices.
Treatments began with saw palmetto, an ancient herbal remedy that provides relief for some men, but it wasn’t enough. We switched to prescribed medication, but with inadequate relief again, we focused on surgical options to remove excess prostate tissue.
The prospect of surgery gave me pause. My father had undergone surgery with unhappy results. The tube (urethra) from his bladder and a valve (sphincter) were damaged by the surgical procedure and he was fitted with a permanent catheter to drain his urine into an external bag. Repeated infection, where the catheter entered his lower abdomen, led to his death at age 94.
But I had learned to trust my urologist and when he told me the operation could be done without cutting anything but excess prostate tissue, I asked when I should check into the hospital. He gave me one week to change my mind and explained that he would perform a transurethral resection of the prostate (TURP). Afterward, nurses told me the tissue that had been removed was in a cluster about the size of a golf ball. I was released the next morning.
The operation provided a surprise benefit: it may have saved my life. Before the prostate tissue was removed, it had concealed from view a papilloma tumor, like a pedestal, growing on the lining of my bladder which was also removed. Microscopic examination led to a diagnosis of a “low-grade” malignant tumor.
Follow-up examination two weeks later revealed that a dozen more papilloma tumors had sprung up out of the epithelium lining the bladder. Surgery without delay was indicated, but hospitalization probably would not be required this time.
The verdict this time was an outbreak of malignant “high grade” tumors. Since none of the tumors had “left the scene of the crime” (grown deeper and into the bladder lining), they were superficial epithelial growths that could be wiped out by special bacteria, known as Bacillus Calmette-Guerin (BCG), suspended in a solution. As described by the American Cancer Society:
“BCG (solution) is put right into the bladder through a catheter. It reaches the cancer cells and ‘turns on’ the immune system. The immune system cells . . . attack the bladder cancer cells . . . (and) come in contact with (them). This is why it's used for intravesical therapy.”
BCG treatment is done once a week for six weeks and may be repeated for another six weeks if needed, but it wasn’t in my case. Instead, following the six BCG treatments, my urologist visually examined my bladder lining with a cystoscope—monthly at first, then quarterly for two years, semiannually for two more years, and now annually. No additional tumors have been found since my ambulatory surgery 10 years ago.
I am grateful to be known as a cancer survivor now, 10 years after my original diagnosis in 2009. Fortunately, my urologist and his team persuaded me to be aggressive in treating my overgrown prostate. They pressed for early surgical removal of excess prostate tissue, which enabled their surprise discovery of malignant, but as yet non-invasive, bladder tumors. We learned to share information fully and to develop mutual confidence, so they knew I would accept an immunotherapy treatment that promised to eliminate cancer cells from my bladder.
I owe my good fortune to the immensely caring and determined medical professionals who could not be satisfied managing my cancer, leaving me to hope for survival. Instead, they invested in a plan to fix my bladder and announced within a few weeks that we had cured the cancer and would confirm that regularly with cystoscope examinations over the years ahead.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Martin Jensen is a retired policy analyst for the U.S. Senate and the National Governors Association (NGA) which represents the chief executives of the states in relations with the federal government. As part of the Senate staff during the 1970s, he worked for the committee now known as the Health, Education, Labor, and Pensions Committee. On the NGA staff, he conducted research and provided state agencies assistance on economic and workforce development policies and programs. Since retiring in 2003, he has experience as a caregiver for two family members with disabilities, as a patient in several medical therapies, and as a volunteer Mentor with Mayo Clinic Connect.