Men, We Need to Talk (About Prostate Cancer)

A prostate cancer diagnosis is frightening. Men can benefit from the insights of patients who have already gone through treatment. Talking openly about treatment side effects like erectile dysfunction and incontinence can help prostate cancer patients and their partners manage their illness and make informed choices.

Source: George Rudy/Shutterstock

In early January 2024, U.S. Defense Secretary Lloyd Austin was hospitalized for an undisclosed health condition. His hospitalization was shrouded in secrecy—even senior White House and Defense Department officials were apparently kept out of the loop about where he was and why. When Austin later disclosed that he had suffered complications following prostate cancer surgery, the public response was more critical than sympathetic. He faced a firestorm of criticism from the media and political pundits, and even calls for his resignation. Why, critics ranted, did a person essential to U.S. security keep his condition a secret, even from the president?

Every Monday morning quarterback likely has their own theory. When I learned the reason behind Austin’s hospital stay, it dawned on me that this powerful and accomplished man wasn’t all that different from any other man struggling with this life-altering disease. Prostate cancer is common; one in eight men will be diagnosed in their lifetime, and an estimated 97 percent will survive. Yet prostate cancer also can take a serious toll on one’s daily quality of life, feelings of masculinity, and intimate relationships.

One of the most important sources of information, support, and “life hacks” for patients is other men who have had prostate cancer. Unfortunately, many men—like Austin—are reluctant to talk about this deeply personal matter. Let’s face it: Many men just aren’t comfortable sharing that they have erectile dysfunction or that they’re wearing adult diapers because of urinary incontinence. That silence means that many men suffer on their own, with few answers to the many questions that will arise before, during, and after treatment.

I know this because my partner, Sam, was diagnosed with prostate cancer last year and had a radical prostatectomy (removal of the prostate) on Valentine’s Day 2023. Sam is fortunate: He has excellent health insurance, lives in close proximity to top hospitals, has a network of supportive family and friends, and is a health care provider himself who understands the ups and downs that accompany any surgery. As a white, straight, middle-class man, he is spared of the racism, heterosexism, and classism that can intensify the stress of any health crisis. Yet, he still felt alone, with countless questions, feelings of disappointment when his recovery didn’t go as quickly as he expected, and a troubling uncertainty about what complications might lie ahead. His experiences may be helpful to other men in a similar position.

Talk to other men about their treatments—the good, the bad, and the ugly.

When all you have is a hammer, everything looks like a nail. That means that if you go to a surgeon, they’ll likely recommend a radical prostatectomy. A radiation oncologist will recommend radiation therapy. And while they may tell you some of the downsides of the treatments they perform, they will almost certainly neglect others—especially those pertaining to quality of life. That’s what Sam learned from the men in his Zoom support group. “If I had only known then what I know now, I’d do something differently” is a common lament. That could be taking a “wait and see” (active surveillance) approach, which more doctors are recommending today, or opting for a treatment that has different (and potentially more tolerable) side effects. Joining a support group even before you’ve decided on a treatment can help you make an informed decision. In most cases, there’s no need to rush into a treatment decision, as prostate cancer is a slow-developing condition. Knowledge is power, and that knowledge is best received from men a year or two ahead of you in the process.

Find your “life hacks” and share them with others.

For those who undergo prostate cancer surgery, daily life can change dramatically—especially in those early days after surgery when you’re managing a catheter, or even weeks or months later when urinary incontinence recurs. Simple adjustments and purchases can make life a bit easier. Tear-away pants make it much easier to use the bathroom when you’re hooked up to a catheter. Claiming the aisle seat on airplanes, theaters, and religious services makes it easier to dash out if nature calls. If you’re taking a long road trip, research in advance where the rest stops are. Add Kegel exercises to your regular fitness routine. (Don’t worry; no one can see you do them.)

Distraction also can be helpful at times. Sam binge-watched a childhood favorite: old episodes of Columbo. Mel Brooks’s autobiography provided some comic relief. A dear friend sent us a jigsaw puzzle subscription. Searching for that missing puzzle edge can make a patient temporarily forget their discomfort. While these tips may seem simple, they can go a long way in reducing daily stress.

Follow up with your sources.

Before having a procedure done, it’s important to ask questions—not only of doctors but also of patients who had the same procedure. But we “don’t know what we don’t know,” so those initial rounds of information-seeking only scratch the surface. Reach back out to your sources three, six, or even 12 months after treatment if new and unexpected questions arise. If the doctor told you you’d have normal sexual functioning 12 months after surgery but you’re still far from that goal on your one-year anniversary, seek out others to learn about what their timeline was. If you had a quick tutorial on how to use a penis pump but don’t actually use the device until six months later, you may need another primer. If you’re diagnosed with a new health woe or start up a new medication, ask about how it might interact with medications for erectile dysfunction. Likewise, if you’re the source of information and advice to a man newly diagnosed with prostate cancer, reach out to see how he’s doing and how you can help. He may be too stressed to initiate the follow-up conversation himself, so regular check-ins would be a great help. Healing is a slow process and requires continual updates on information.

A therapist can be helpful.

Many men can benefit from turning to a therapist—an impartial person who can help to manage the fear, anxiety, and sadness that often accompany a cancer diagnosis. A therapist can be helpful at any stage of the process—the tense days after receiving the “big C” diagnosis, the anxiety of making a treatment decision, the symptoms that follow the treatment, and the changes to one’s personal relationships that sometimes happen when a partner is managing chronic illness. Some members of Sam’s support group were fortunate that their workplaces provided case management services; finding a point person who can coordinate your mental and physical health care can be a game changer.

Chronic Illness Essential Reads

How Chronic Illness and Masculinity Intersect

Cognitive Distortions Experienced in Chronic Illness

Remember: This is just a short-term diversion.

For many men, the worst part of prostate cancer is its impact on their sex lives. For the first year after treatment, most men completely lose the capacity to have or maintain an erection. Some find that their penis looks different or smaller than it did before the surgery. These kinds of changes can threaten one’s sense of masculinity and even lead to depression. But these physical consequences likely won’t last forever, and if they do, it just means that couples will come up with a Plan B for intimacy. Many resources are available to help couples maintain satisfying physical relationships even when age-related changes—whether prostate cancer or other conditions—alter what their physical relationship looks like. For couples that have been together for many decades, a year or two (or three) with a new and different approach to sexual relations is just a bump in a long road of togetherness.

Broaching that first conversation or making that first phone call to seek advice from a fellow patient, or to offer them advice yourself, can be daunting. But most men in their 50s, 60s, and older have tackled countless other more difficult challenges and can overcome this hurdle, too—if they have the support and encouragement they need.