Tackling Incontinence and Prostate Cancer Together
By April E. Clark
Richard "Dick" Howe lives by the following motto: "Those who know the most do the best." Howe, the retired president and chief operating officer of Pennzoil Company, suffered from incontinence due to prostate cancer surgery and, true to his motto, has counseled more than 3,000 prostate cancer survivors worldwide.
"My objective is to get information out there," says Howe, who has served on more than 15 national committees regarding incontinence and prostate cancer, and is considered by many to be the leading lay expert on the disease. "Along with my wife, Desiree, it really is our ministry."
Howe’s experience with incontinence began after he was diagnosed and treated for prostate cancer in 1991. He underwent a medical procedure that removed his prostate, which is the almond-shaped gland that helps control the release of urine from the bladder in men. As a result, Howe experienced ongoing mild-to-moderate incontinence, as well as varying degrees of stress incontinence, a condition he managed by using Depend® absorbent products.
"Stress incontinence can be very embarrassing if you laugh, sneeze or lift something heavy," he says. "In my case, incontinence was manageable. The undergarments played a significant role."
Although Howe says the physical impact of incontinence was difficult to experience, it was the emotional effects that really took a toll on his life. At the time he was first diagnosed, there was little information available to patients other than pamphlets available at the doctor’s office.
"Even the moderate incontinence was unbelievably devastating to me," he says. "I was always embarrassed, and I felt that I couldn’t go anywhere because I was worried about some type of accident."
Such feelings of self-doubt are commonplace for patients diagnosed with incontinence, according to Cheryle B. Gartley, president and founder of the Simon Foundation for Continence, a not-for-profit organization whose mission is "to bring the topic of incontinence out of the closet, remove the stigma surrounding it and provide help and hope to individuals with incontinence, their families and the health professionals who provide their care." "We hear weekly from men experiencing the emotional issues and the stigma attached to incontinence," says Gartley, also co-author of Managing Incontinence: A Guide to Living with Loss of Bladder Control.
Howe credits his wife for moral strength during his most trying bouts with bladder leakage. The couple met during the period of time in which he was both incontinent and impotent, common issues for prostate cancer survivors. Desiree recalls the moment when Howe approached her about his health condition.
"He just came out and said it, hoping I didn’t react strongly," she says. "I told him: ‘This we can fix. Bad character we can’t fix.’"
As a team, the Howes confronted his incontinence and impotence and started a mission to help others as well. "There’s an old saying that prostate cancer is a couple’s disease, and that’s very true," Howe says. "We tell people that if you share your health problems as a couple, you can move forward and solve the problems together."
Desiree says that support in the form of understanding is one way she was able to help her husband with the emotional impact of incontinence. She stresses that once understanding is in place for a couple experiencing incontinence, action can more easily follow. "It’s better to communicate about incontinence so the man really feels like his wife can help him," she says.
The Howes' firsthand experience with prostate cancer motivated Desiree to write His Prostate and Me: A Couple Deals With Prostate Cancer (Winedale, 2002). In the book, Desiree details the role prostate cancer played in the couple’s marriage and how side effects such as incontinence and erectile dysfunction affected their relationship.
"I wanted to write a story about the actual impact that prostate cancer had on our lives," she says. "So many people were literally coming out of the woodwork who were dealing with the disease on a day-to-day basis without any information."
"It is so essential that you learn more about incontinence, because in learning, you come to understanding, and in understanding you can help a spouse with both the emotional and physiological problems associated with it," says Desiree, now a patient education and advocacy expert on prostate cancer who serves on the boards of M.D. Anderson Cancer Center and the National Organization of Rare Disorders.
Desiree incorporated her personal experience as a spouse of someone managing the condition into the book. "The everyday challenges can be difficult," she says. "I found out firsthand that a lot of time you must have pads and extra clothes or underwear packed just to go out," she says. "With incontinence, you always have to be covered and that’s a challenge. A lot of spouses are supportive, but many of them are not trying to find an answer. Maybe out of fear, some women walk on eggshells around the subject ... In my experience, it is always better to communicate as a couple."
Desiree says a key to managing incontinence is securing the right health professional. "Finding a great urologist or family doctor is very important," she says. "Your doctor needs to know what to do and how to discuss incontinence openly and honestly." She also suggests doing some research on the patient's behalf. "Go to the bookstore or go online and research it," she says. "Read whatever you can and learn the most you can about incontinence. That’s how Dick started."