Why Some Men Keep Their Prostate Cancer a Secret

September 19, 2024 8:02 AM EDT

When it was revealed in January 2024 that Defense Secretary Lloyd J. Austin, III was privately being treated for prostate cancer, many wondered why he hadn’t disclosed his diagnosis sooner. Austin later explained that he felt President Joe Biden had enough going on and didn’t need to be burdened further. “When you’re President of the United States, you’ve got a lot of things on your plate,” Austin said at a press conference. “I just didn’t feel that that was a thing that I should do at the time.”

While few people with prostate cancer are in quite as public a position as Austin, the desire to avoid disclosing the diagnosis is common. In fact, some research has found that a majority of men keep a prostate cancer diagnosis secret when they can, due to a number of factors, including fear of being stigmatized or seen as a burden.

Ultimately, any person going through any type of cancer gets to decide how much they share about their experience and who they share it with. But people with prostate cancer generally report receiving positive, supportive feedback when they disclose, and may miss out on opportunities for connection and care if they never speak up.

“Keeping a cancer diagnosis a secret is a choice probably made a little less commonly these days because of social media and the growing prevalence of discussions of cancer in the media and everyday conversations,” says Dr. Jesse R. Fann, medical director of psychiatry and psychology at the Fred Hutchinson Cancer Center in Seattle, and a professor at the University of Washington. But that doesn’t mean every cancer patient has gotten that message of acceptance.

Why disclosure is daunting

Keeping prostate cancer a secret is likely a little more common at earlier stages of disease, Fann observes. He sometimes sees people delay disclosing a diagnosis until after a first round of treatment so they have a better sense of their prognosis, for example. But with more-advanced, metastatic prostate cancer, treatment may be harder to hide. “Their prognosis may be worse, [which] oftentimes leads to a higher sense of urgency [to disclose],” Fann explains.

That said, people with all stages of prostate cancer may still choose not to disclose their diagnoses. Here are a few more of the possible reasons.

They’re not ready to process the news themselves

For many people with prostate cancer, there’s an initial period of denial after diagnosis. “What people experience at first is, ‘No, it’s not true,’ and then they struggle to accept that they have cancer, so keeping it a secret is really just protective psychologically,” says Vittorio Comelli, a clinical psychologist in psycho-oncology at the UCSF Helen Diller Family Comprehensive Cancer Center.

As Fann adds, “In general, the diagnosis of cancer can certainly impose a significant sense of vulnerability on individuals, and disclosing their diagnosis can certainly heighten that sense of vulnerability for some.” That might be especially true of someone who “strongly values their identity as a healthy and self-reliant person,” he notes, or if they have a public persona to uphold, as in Austin’s case.

They don’t want to be a burden

Some men feel they have a responsibility to play a certain role as a strong, healthy, provider, Fann says. A prostate cancer diagnosis may not fit into that narrative, and men may end up keeping their diagnosis a secret to avoid feeling like a burden or causing worry to the people they love.

Comelli, who has been working with people with prostate cancer since 2005 and estimates he’s seen thousands of patients in his support groups, notices this most frequently in people with prostate cancer in high-powered jobs. “They have a very hard time disclosing … because they believe that others would think less of them, feel pity on them, treat them differently,” he says.

“I think that’s changing, [but] I think there’s this feeling that men have to … take care of everybody, and then all of a sudden they’re in a situation where they’re very vulnerable, so they may not want to share that, even with their closest loved ones,” says Lorelei Mucci, director of strategic research partnerships at the American Cancer Society and the director of the Cancer Epidemiology and Cancer Prevention Program at the Harvard T.H. Chan School of Public Health, who has been researching prostate cancer for more than two decades.

The symptoms and treatment side effects feel private

Prostate cancer and its treatments can cause stigmatized symptoms like urinary incontinence, sexual dysfunction, and breast enlargement in men that may simply feel unpleasant or undesirable to discuss.

“When you can’t control your basic bodily functions, it carries a particular kind of psychological regression that has a lot to do with shame, and that’s another thing that prevents people from disclosing,” Comelli says. “And with erectile dysfunction, that is a particularly injurious thing for men in their sense of sexual functioning and their sense of being a man.”

The benefits and downsides of disclosure

In the short-term, keeping a diagnosis private can have benefits, Fann says, especially if the person feels stressed, vulnerable, or anxious about disclosing; by avoiding the conversation, they get to avoid these uncomfortable feelings.

But “short-term advantages can dissipate quite quickly, as a person may need more help managing their cancer in different ways, including emotional and practical needs,” he says.

Plus, there are more serious risks to consider over time. “In the long term, holding emotions back without an outlet can lead to an increase in stress, anxiety, depression, [and] social isolation,” Fann says. Greater social support has also been linked with improved outcomes for certain types of cancer, according to the National Cancer Institute.

But talking about a diagnosis doesn’t just help a person with prostate cancer access more support; it may also help their loved ones. “Disclosing with family and friends can actually help them cope better and feel like they can better help their loved one with cancer,” Fann says.

How to encourage disclosure without pushing too hard

If you’re a doctor treating someone with prostate cancer who doesn’t want to disclose their diagnosis and you’re concerned for their long-term well-being, it’s appropriate to have a conversation about the potential risks and benefits. But it shouldn’t feel like you’re trying to coerce them into something they aren’t ready for. “It’s always the person’s choice, if they want to [disclose or not], and when and how they do it, and I always validate that choice and never force someone,” Fann says.

He suggests putting the discussion in perspective: “I often ask, ‘Would you want to know if someone you care about got a similar diagnosis?’ That often allows them to think about things from the other person’s standpoint,” he says.

You can also help a patient brainstorm and even role-play ways of bringing up the topic with various loved ones to make the conversations a little more comfortable when they occur, Fann suggests.

Remind them they can establish boundaries about whom they choose to share their diagnosis with. “People often ask me not, ‘Should I disclose or not disclose?’ but ‘Who should I talk to about this?’” Comelli says. His answer: “Disclose things proportionate to the level of intimacy that they have with particular people.”

The level of detail someone decides to share with a close family member is likely not the same detail they’d share with an acquaintance or employer, Fann says, and that’s absolutely normal. If they’re having a hard time disclosing to loved ones, consider encouraging them to lean on a support group, which can help alleviate the mounting pressure of keeping a diagnosis a secret. “Maybe they still aren’t ready to disclose more broadly, but at least they feel they have people going through an experience like them,” Mucci says.

That connection is strengthened when the group focuses on a specific aspect of their identity, she says: Educate your patients that there are prostate cancer support groups specifically for, say, Black men or for gay men. “The stigma can be very unique for different populations of people,” she says.

Comelli has run some of those support groups specifically for gay men. “Just being in a group with other gay men has a protective and somewhat psychologically healing function,” he says. “These are [often] people who have grown up in a homophobic environment and their experience of prostate cancer and the side effects of treatment [can] really ramp up the trauma of growing up gay.”

That protective environment could be even more pronounced if the person with prostate cancer is a trans woman, Mucci says, as receiving care for an organ that doesn’t match their identity may bring up additional trauma.

Keep an eye on people with prostate cancer who always come to appointments alone. It might be worth asking, “Do you have people in your life who are supporting you?” Mucci suggests. If they say no, that gives you an opportunity to remind them of upcoming support groups at your medical facility or ask if they’d like to be connected to an oncology social worker, a member of a psycho-oncology team, or a patient navigator who can help connect them with even more resources, Comelli says.

Prostate cancer hasn’t experienced the type of public support that some other cancers have. “In contrast to breast cancer, where you had celebrities coming out and talking about their diagnoses, and then patients really rallying around the diagnosis and coming together, we didn’t really have that in prostate cancer,” Mucci says. No one needs to tell everyone at the office or on Facebook or start their own prostate cancer awareness organization, but even just having one person in their corner can make a big difference for their mental and emotional health throughout their treatment journey, she says.