Prostate cancer guidance can be a tangle of mixed messages 

Treat. 

Wait. 

Worry. 

Relax. 

A diagnosis of prostate cancer is typically delivered in terms of straightforward numbers that indicate the likely status of the disease. From there, guidance is contradictory and confusing, leaving patients, spouses and families to sort through treatment options and their implications for lifestyle and relationships. 

Initial optimism is usually set up by cheery messaging that positions prostate cancer as slow-growing and, thus, easily treated and managed. The ubiquitous cliché that patients “die with prostate cancer, not from it” is repeated by doctors, medical researchers and lightly reported stories in the media. 

It’s not true, say advocates. 

Pull quote: “What we’re hearing from prostate cancer patients is that they weren’t adequately prepared for the serious side effects.” (Jeremy Patch, director of patient programs for ZERO Prostate Cancer)In 2020, the latest numbers available, 201,082 American men were newly diagnosed with prostate cancer, according to the Centers for Disease Control and Prevention. In 2020, 32,707 American men died of prostate cancer. The top-line numbers signal optimism: Prostate cancer patients have a 96.3% chance of surviving for at least five years, in contrast to the 12.4% rate for pancreatic cancer, one of the most aggressive.

But the daily reality for prostate cancer patients, their spouses and families is obscured by those numbers, say advocates. “What we’re hearing from prostate cancer patients is that they weren’t adequately prepared for the serious side effects; that the side effects were minimized and patients are sometimes brushed off with ‘here’s a brochure and let’s get the treatment scheduled.’ And then people just deal with this for the rest of their lives and try to find treatments that work,” says Jeremy Patch, director of patient programs for national prostate cancer advocate ZERO Prostate Cancer. 

The prostate is a walnut-sized gland positioned immediately under the male bladder. It produces the fluid that mixes with sperm to create ejaculate. The urethra — the tube that carries urine from the bladder through the penis — is embedded in the prostate. 

Therein lies the problem: It’s not simple or easy to eradicate prostate cancer without permanently affecting the function of the bladder and urinary tract, and, often, adjacent lymph nodes and organs like the bowel. All the options — surgery, radiation and hormone therapy — affect a patient’s ability to control the flow of urine and sexual function. 

Below are three myths and realities of prostate cancer, and how patients, spouses and families can fine-tune their exploration of treatments and more fully understand the implications.

Myth: Each treatment has its advantages and disadvantages.

Reality: Of course, each procedure is different, but there’s a distressing side effect that is nearly universal: incontinence.

The male anatomy is complicated and neutralizing the prostate — by surgical removal, radiation or with hormones — erodes the urinary tract’s ability to contain and control urine. 

Incontinence is one of the rarely discussed and most distressing side effects of any treatment, says Patch, and can be one of the most life-changing. Doctors rarely talk about it, especially when presenting treatment options. The immediate post-surgical recovery involves catheters, of course, but freedom from absorbent pads and briefs depends on the patient’s ability to retrain his system, often through physical therapy. 

The very definition of “continence” is where patients’ experience veers away from expectations. 

Urologists and surgeons commonly define “social continence” as using one absorbent pad a day. But that’s not the same as using no pads. Fear of accidents, the endless awareness of proximity to bathrooms and managing absorbent products becomes an endless stress for patients who had no idea that the cancer treatment would permanently change their capacity to stay dry. 

A first-person experience shared among professional members of the American Urological Association describes one patient’s struggle even to find “not a cure, but a management tool.” He relates how incontinence undermined his enjoyment of travel, events and sports — a nearly universal experience, say advocates. 

Illustration of tense senior couple, sitting on either side of a bed
Among the myths about prostate cancer is that it’s a “man’s disease.” The reality is that when treatments wipe out a man’s sexual function, it becomes a couple’s disease. (Illustration: iStockphoto.com/Valentina Levashina.)

Myth: Prostate cancer is a man’s disease.

Reality: When treatments wipe out a man’s sexual function, it becomes a couple’s disease.

Erectile dysfunction is nearly guaranteed, according to experts at Johns Hopkins. Sparing nerves essential for sexual function is often top of the discussion before surgery, but this may or may not be possible, depending on what the surgeon discovers. Radiation and hormone therapy also undermine sexual function in their own ways, resulting in the depressing conclusion asserted by the Johns Hopkins experts. 

It’s a lot to ask of men whose entire plumbing has been retooled: Things that used to work reliably (continence and erections) don’t, and they have to retrain their systems to regain a semblance of their prior lives. Meanwhile, their spouses are largely left out of the conversation, even though they are simultaneously deprived of intimacy — not to mention called upon for energy- and libido-sapping caregiving. 

The medical profession is just starting to address the dynamic of couples on prostate cancer patients’ quality of life. One study of couples’ interactions regarding the male partners’ diagnosis, treatment and recovery, found that spouses felt isolated and at a loss as to how to help a spouse facing a messy and complicated recovery. Not surprisingly, a different recent study discovered that spouses who were included in realistic, pragmatic discussions about the diagnosis, outcomes and systemic changes that their partners faced were much more likely to be supportive and speed spouses’ recovery. 

Myth: Prostate cancer is a “good” cancer. 

Reality: Is there any such thing? 

Prostate cancer is the fifth-most-common cause of cancer mortality in men, so it’s not surprising that another study found that about 66% of these patients were depressed. That same study recommended counseling, support groups and help for partners as essential for patients and partners to find a positive path forward. 

That’s why ZERO and local groups sponsored by hospitals offer a variety of programs for men coping with the disease, including specialty groups for Black men, who are more likely to develop prostate cancer. Social connection and acceptance may be the most enduring cure of all, according to a study published by the U.S. National Library of Medicine, for a disease that attacks fundamental elements of male identity and dignity. 

The key is to understand your own risk factors and always have an open dialogue with your primary care doctor and urologist, says Brian Keith McNeil, a urologist who has been involved with the American Urological Association’s prostate cancer education efforts. “For prostate cancer, we advocate shared decision-making,” he says. “Ask for a referral to a urologist and discuss if you should get screened depending on your age, family history, ethnic background and other factors.”

Reviewing procedures, options and likely outcomes with your family and close friends is also helpful, says McNeil. “There’s so much information available, but context is important,” he says, stressing that each person’s situation and decisions are unique.

Top illustration: iStockphoto.com/Nadezhda Buravleva.


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