Why men are secretive about prostate cancer

US Defense Secretary Lloyd Austin underwent surgery late last month to treat prostate cancer — a diagnosis and treatment plan he initially kept secret from his boss, and the American public. It wasn’t until several days after Austin ended up in the hospital due to complications from the surgery that the information was announced by the Pentagon.

Austin’s efforts to keep his health care scare under wraps backfired very publicly: Lawmakers on Capitol Hill demanded an internal review of Austin’s office and the Pentagon’s inspector general launched a probe into policies around the transfer of power.

But it was his efforts to keep details of his condition secret that caught the attention of longtime cancer screening advocate Howard Wolinsky. Wolinsky is a former medical editor of the Chicago Sun-Times who was diagnosed with prostate cancer in 2010. He now helms a Substack newsletter dedicated to all things prostate cancer called The Active Surveillor.

“Thirteen years ago, I was diagnosed with low-risk prostate cancer and came this close — my fingers are close together — of having surgery that, in the end, it turned out I didn’t need,” Wolinsky said. “And it put me on a path that I never expected of creating support groups for men with low-risk prostate cancer like I have.”

Noel King, host of Vox’s Today, Explained podcast, spoke to Wolinsky and about the stigma associated with a diagnosis like Austin’s and the fear many men have when it comes to the prostate exam itself; and to Dr. Michael Leapman, a urologic oncologist and associate professor of urology at the Yale School of Medicine.

A transcript of their conversation follows, edited for length and clarity.

I wonder if we can get very basic, very remedial for a second, and you can just tell us what a prostate is and who has one.

The prostate itself is a gland. Often you’ll hear it’s the size of a walnut. But that’s kind of misleading. I mean, when a boy is born, it’s a tiny little thing; as you get older, it grows larger. So where is this gland? It’s situated below the bladder and in front of the rectum. And it surrounds a part of the urethra, the tube in your penis that carries the pee from your bladder. So, okay, what does the prostate do? Prostate helps make some of the fluid in semen, which carries sperm from your testicles when you ejaculate.

A-ha … so y’all need your prostates. Humanity needs your prostates …

You need your prostate — up to a point. And I should point out, too, if a man lives long enough, he’s going to have prostate cancer and probably won’t even know it. Something like 80 percent of men 80 and above have prostate cancer. It’s a disease largely of aging.

Howard, one of the reasons that we really wanted to speak to you was because you wrote a column, “I understand why Defense Secretary Austin kept his prostate cancer quiet.” What made you write that piece? What were you thinking?

I understand why Austin would want to be quiet. But the sub-subheadline was to the effect that he should be more open because he could help other people.

I was watching the news with one of my sons, and I said, “Dollars to doughnuts, it’s prostate cancer.” And my sons think that I have prostate on the brain because I’m an advocate. But here’s why I thought this was the case with Austin. First of all, his age. He’s 70 years old. The average age for diagnosis with prostate cancer is 66. Second of all was his race. Black men have a higher incidence and a higher mortality rate from prostate cancer.

So if I were a betting man, I would have bet that it was prostate cancer. Well, I did bet dollars to doughnuts, right?

And you won the dollar …

Well, I didn’t even get the doughnut, damn it.

Why did [Austin] keep it secret?

Well, of course, only he could answer that. But I can speculate that, first of all, he was afraid. He was afraid of what was happening to him. He was making some of the biggest decisions of his life. And for all we know, he was in a bit of a panic. He keeps state secrets. That’s part of his training, and that’s his life.

And now he’s dealing with a cancer. And so I suspect that his first reaction was to be secretive about it. He was in the military. And I think that it’s a macho environment. And so I don’t think you want to show vulnerability, and I don’t think you can show vulnerability about a cancer in a sexual organ.

I’m a woman, okay? So I don’t actually know what’s going on in these exams. But can you talk a bit about what happens in a prostate exam that seems to make men so uncomfortable?

Well ... you’re exposing your butt to the air, you bend over a table, so you’re sort of vulnerable. A doctor — could be a male, could be a female doctor — puts a glove on and puts a finger or two in there and feels the surface of the prostate looking for bumps, lumps, so on. I personally didn’t find it that uncomfortable. I didn’t find it that embarrassing. But it’s been a number of years since I’ve had one.

Dr. Michael Leapman, an oncologist at the Yale School of Medicine, is here to help us dig a little deeper.

Rectal examinations are helpful in some cases, but in some cases they can actually be a false positive. You can think you feel something, even if you’re very experienced, and it turns out to be nothing. And so I know it’s a barrier for some people who don’t want to even talk about prostate cancer screening because they’re worried it’s going to end up in a rectal examination. To the question [some Today, Explained callers sent to the show] of having an orgasm or ejaculating with a rectal examination, I’ve never seen it. It’s a quick examination, and I don’t think it’s a big concern that someone will instantly have an orgasm from having a rectal examination.

The main way that we screen people for prostate cancer is using a blood test called PSA that stands for “prostate-specific antigen.” It’s quite accurate. It doesn’t find every prostate cancer, and in fact, in people who have a lower PSA, you can still find prostate cancer. But it’s a very good tool that does detect the majority of aggressive cancers at an earlier stage.

We just said that PSA is a great test, but it is prone to fluctuation. PSA is a protein that’s made by the prostate, and it’s made by cancerous tissue in the prostate. It’s made by non-cancerous tissue in the prostate, so it doesn’t perfectly distinguish between cancer and not cancer.

What does treatment for prostate cancer typically look like?

The most common treatment options are — especially for low-risk or active surveillance, which is close monitoring of the cancer, which is what I do — radiation therapy and radical prostatectomy. In some men, it’s hormonal therapy, which is androgen deprivation therapy.

Successful treatment to me is the right treatment for the right patient at the right time. Every person is different, and every treatment and every plan has to be different. And so for some people, it’s not treating the cancer. In some people, it’s careful monitoring and doing what we call active surveillance.

In others, it is local treatment to the prostate involving surgery to remove the prostate or radiation. In some cancers that we find, they have spread beyond the prostate. And then it’s really a multimodal treatment involving systemic therapy, hormonal therapy, and potentially chemotherapy and other treatments.

Prostate cancer is interesting because it is one where you are balancing multiple risks. You’re balancing the risks of the cancer itself, the risks from the treatment, and every person’s preference.

We know that the cancers that are ultimately lethal and aggressive probably start at a younger age, and they could be as early as 30s or 40s or 50s. Most men are diagnosed with prostate cancer in their 60s in the US, and that’s usually because they haven’t been screened earlier. The guidelines from the American Urological Association and other organizations recommend at least a consideration of getting a PSA test at age 45, and earlier if you have a stronger family history. So if you have a first-degree family relative, a father or a brother or a known strong family history of cancer, or Black ancestry, those are considered higher-risk groups for which screening could be done as early as 40.

Howard, all of this worry around the test, the secrecy around when you’re diagnosed, you don’t want to tell people — it makes me wonder whether prostate cancer is maybe even deadlier than it needs to be because so many men really don’t want to have awkward conversations with their doctors, or don’t want to get a test that sounds, to me, profoundly uncomfortable.

Noel, could this be any worse than what the doctors do to women with vaginal exams?

Absolutely not. Point taken, thank you, sir. I’m going to get in so much trouble with our listeners. But women do tend to man up a lot better than men.

I think one of the reasons that we want to have this conversation for our listeners is because we want to draw attention to the fact that this diagnosis doesn’t have to be the end of the world, and the test itself doesn’t have to be the end of the world. It’s just sort of wrapping your head around, okay, buddy, this is going to be uncomfortable for a while.

If I can disagree with you a little bit ... I’m on something called active surveillance. Maybe once a year, I have a PSA test. My doctor told me I have about the lamest cancer he’s ever seen. Those were the words. But on the one end of the spectrum, like me, it’s the sleeping lion, and the other end, with advanced cancer, it’s the snarling tiger. And there’s a huge difference.

The challenge is that a proportion of [cancers] are dangerous, and many of them are not. We encourage people to stay up to date on screening. But in fact, guidelines suggest that we should not screen people over the age of 75 or people with less than a 10-year life expectancy, because finding cancers and treating them might not improve their life, might not improve their longevity.