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Prostate Cancer Mentors Help Ease the Pain for Their Brothers in Recovery

Frightened, embarrassed and alone, men recovering from ‘down there’ cancer often feel they have nowhere to turn. Having a buddy to call can change all that.

After 10 days of peeing into a bag, Paul Lewandowski was looking forward to getting his catheter removed. The nurse practitioner looked at him, he remembers, and told him that she was going to yank the device out on the count of three. “She said ‘one,’ she said ‘two’ and then she pulls on three,” he says. “I’m like, ‘Where did three go? There was supposed to be a three!’”

It didn’t hurt, at least, although he’d been told that would be the case. He also knew that holding in his urine for the next month was going to be a challenge, and that he was going to lose an inch off of his penis, “which is something they don’t tell you,” he says.

The latter depends on who you ask. Most doctors and health-care professionals tend to not tell you about all the bodily mortifications coming your way when you’re diagnosed with prostate cancer — they have other concerns. But there are men who know from firsthand experience what it’s really like, a uniquely terrifying ordeal and one that often makes them question their very identity as a man as their body finds new ways to revolt against them.

Fortunately, Lewandowski didn’t have to go through it alone. Sitting in his office in Portland, Maine, the 54-year-old architect commiserates via Google Meet with a friend he’s never met in person. John Vaughn is a 61-year-old real estate agent who lives in Mattapoisett, Massachusetts. Vaughn knows how hard and often humiliating it is to have prostate cancer, but he also knows it’s not hopeless: He’s been cancer-free for six years.

When Lewandowski was 44, he had a test that showed that his Prostate-Specific Antigen levels had risen. PSA screenings are used to detect a protein created by the prostate gland, and are often the first test for prostate cancer that most men get before getting more invasive procedures such as a rectal exam or a biopsy. (Rising PSA levels alone don’t necessarily indicate the presence of prostate cancer; men’s PSA levels rise as they age, so the important number is the rate at which they increase.)

Paul Lewandowski (photo by Ava Zwolinski)

“For a period of about 10 years, my PSA continued to rise. I’d had a couple of biopsies. I’d had some MRIs,” Lewandowski says. “They never found any cancer. They always thought it was something else. But then my PSA went from 11 to 18 over the course of the year.”

He got a biopsy on December 17, 2019. On the day after Christmas, he was on a road trip with his wife and 23-year-old daughter, singing along to Billy Bragg, “just remembering things. And then the phone rang,” he tells me. “It’s not the doctor, because everybody’s on vacation. It’s his nurse practitioner, and she says, ‘Well, they found cancer in two of the cores.’ And at that point, I just went blank. Because you never expect to hear it.”

When his PSA levels first started going up, he hit the search engines hard. Eventually, he found the organization ZERO — The End of Prostate Cancer, a nonprofit advocacy group dedicated to raising awareness and supporting patients and caregivers. In 2018, ZERO started the MENtor program, which pairs prostate cancer survivors with men who have been recently diagnosed with the disease.

“Prostate cancer is often referred to as a ‘silent killer,’ since the disease can present with no symptoms. But prostate cancer is a doubly silent killer as men don’t publicly talk about this disease very often,” says Shelby Moneer, Zero’s Vice President of Patient Programs and Education. “We saw this silent suffering play out too often, and wanted men to no longer feel isolated in their prostate cancer fight. That’s why we started the MENtor program.”

MENtor tries to make a match based on the mentor and mentee’s background, including whether they had surgery to remove the cancer or underwent radiation. Every pairing is different, and Vaughn, who’s served as a mentee to eight men now, says that sometimes there’s not much chemistry between the pair. “Some people just need to get 10 questions out and then you never hear from them again,” he says, “and other people you really connect with and become friends.” (Which is what happened with Vaughn and Lewandowski.)

Vaughn was 54 when his PSA levels first started rising, and after a year, he had a biopsy. “At that point, you can get a clear and convincing diagnosis, of it being cancer or not cancer. It was August 6, 2014, when I had my prostate removed. And I’ve been very fortunate in that, so far, the cancer hasn’t recurred. I’m living a fairly healthy life.” As proof, he was in his sweatshirt during our call, having just got off the treadmill in his basement.

John Vaughn

He decided to take his health seriously in his 40s by quitting smoking and running marathons to get in shape. A few years ago, he was introduced to ZERO when the organization took ownership of the Boston Prostate Cancer Run, which he’d begun participating in after his diagnosis. “They came to me and asked if I’d consider being a mentor. I immediately said yeah, because it gives purpose to your experience,” he says. “When you’re dealt this card, you have to try and make sense of it.”

ZERO matched the two together, and Lewandowski reached out to Vaughn a few days later. Lewandowski’s surgery wasn’t scheduled until March, “so John had to deal with me for the entire three months. And then, still, actually,” he says. The two of them hit it off immediately and would talk three to four times a week in the time leading up to Lewandowski’s surgery, and saw each other for the first time recently when they were both on a virtual panel for Zero.

Part of the reason they connected is because they were both in their 50s when they were diagnosed, which is “not so common,” Lewandowski says, adding that when men hit their 60s and 70s, “it gets to be much more common,” though they urge all men to start getting their PSA tested when they turn 40.

Lewandowski had started seeing a therapist to attend to his mental health and a coach in order to get in shape before his surgery, but Vaughn was able to offer help that no one else could provide. The day before his surgery, Vaughn called him and told him in detail how it’s going to feel like he was hit in the gut 20 times in a row, and that it was going to take time for his urethra to heal, and urinating was going to be a challenge. “I’m like, ‘John, why didn’t you tell me this before?’ And he said, ‘You didn’t need to know it before,’” Lewandowski recalls. “He was absolutely right, because if I’d known it before, I would’ve been in a whole different place.”

The biopsy to collect core samples to test for prostate cancer was bad enough. “I’ve likened it to a staple gun that somebody is firing up your butt 20 times,” Lewandowski says. “You urinate blood. Then, when you ejaculate, it’s a bloody mess, for a couple of weeks at least. That’s just something that you’re not used to seeing.” But he knew the surgery would be worse, even in ideal circumstances — and there were no ideal circumstances for anyone in 2020. “He’s been dealt the card; I call it ‘The Unwilling Brotherhood,’” Vaughn says. “The whole thing for Paul was a roller coaster that added an additional layer of stress because of the pandemic. As terrible as this is for anybody, Paul had to go through more. My empathy factor was at an all-time high.”

The surgery kept getting pushed back because of COVID. His doctor had been exposed to the virus, but since the surgery was robotic and the doctor was at the other side of the room with his keyboard, Lewandowski decided to go for it. It was a strange feeling, he remembers, getting dropped off by his wife that morning at a nearly empty hospital, as Boston was deep in shutdown by that point. There were more strange feelings to come. “I didn’t know what was coming, but John did, obviously. He’d been through it. It was quite helpful,” he says. “That support network that you need after the surgery is really important.”

“I’d like to think of myself as a very enlightened person, but this is a men’s issue in a lot of ways,” Lewandowski continues. “Just like I can’t understand issues that women are affected by, I don’t think that they can understand fully what this means from a psychological and a physical standpoint. I remember being obsessed with the humiliation of wearing a diaper. You have this surgery, and everything changes. You’re in diapers; you’re incontinent. You have total erectile dysfunction. And you start thinking about this whole weird, macho thing. What does it mean to be a man?”

“He’s not alone in feeling that way,” says Vaughn after hearing his friend’s take.

“But you think you are, and that’s the problem,” Lewandowski adds. “Because guys don’t talk about this.”

It’s understandable why they don’t: It’s not exactly pleasant subject matter. Because Lewandowski was incontinent after the surgery, he’d been seeing a physical therapist in preparation, and he’d learned exercises to rebuild his pelvic floor so he could relearn how to urinate. “The thing with the catheter is, it’s there in place so that the urethra can come back together,” he says. “Then you can at least have a path for urine to just get out of your body. But you also need to develop muscles to control that flow.”

It’s better now, he says, though sometimes when he bends down while walking his dogs, “there’s a little leak or something, which, speak to any woman, and they’ll say, ‘Oh, I have that every day.’”

It’s not back to normal, but it never goes back to normal down there, observes Vaughn. “Don’t tell me that, John,” says Lewandowski with a sigh. Of course, every man’s situation is unique. The robot-assisted surgery that Lewandowski underwent is called nerve-sparing: “There’s two nerves on either side of the prostate that are the connection between your brain and basically having erections, and they try to spare them,” Lewandowski says. “You hope for the best, but it’s been nine months and I’m not…”

He trails off a bit, and Vaughn picks up the thread. “It’s been six years, and there’s nothing. Nothing is happening for me. It’s just part of the star you wear as a prostate cancer survivor,” he says. “There are some men who, with nerve-sparing surgery, have full potency afterwards, at some point in time. It takes a while. And there’s other people, like me.”

There are therapies and implants for men who have erectile dysfunction after their surgeries, and doses of Viagra and Cialis are sometimes helpful — and not just for sexual function. “There’s muscle atrophy that can happen. When you’re sleeping and you have erections during the night, that’s actually stretching out muscles and keeping things pliable, I guess,” Lewandowski explains. “And that’s not happening anymore, so you’re looking for ways to do that. And it’s another thing that’s surreal.”

But it’s not hopeless. Lewandowski started injection therapy recently. “I’ll tell you, that was an interesting doctor’s appointment, where they train you how to inject yourself, and how you have to alternate sides,” he says. “I had a couple great experiences with it. Then I had some times where I’d inject myself and I’d have nothing.”

He never used to have problems before the surgery — it’s been a complete 180 for him. He pauses for a moment, and lets out a faint sigh. “It’s still hard for me to talk about,” he says. “There’s just a lot of weirdness with it.”

But any good sex therapist will tell you that penetrative sex isn’t the be-all-end-all of lovemaking, and the key to a happy sex life is all about communication and creativity. To that end, Vaughn notes, “I’ve talked to some men who find their love life with ED actually became more intimate, in different ways. They’d never say it was a good thing, but that they’ve dealt with it, and they’ve found ways to become more intimate, in ways that they would have otherwise never become.”

Lewandowski agrees that there are unexpected upsides: “I look at my relationship with my wife, and we’ve gotten, emotionally, much closer in a lot of ways. But it’s still all so new to me, and to be honest, something that I’m still pretty private about. I’m sort of letting her know what’s going on, but I’m not ready for anything.”

Three months after his surgery, Lewandowski had his first check-up. He remembers panicking when his PSA levels came back at .02, until his doctor told him that number was a statistical zero and the test didn’t go any lower. Vaughn can relate, as a few days ago, he panicked when he got a call from his doctor’s office. Fortunately, they just wanted to move up his appointment time. He’s been cancer-free for more than five years, and statistically, the chances of his cancer recurring are close to zero. But math can only do so much to ease the worry. “It’s a real cloud that hangs over your head all the time. It doesn’t keep you from living your life. It doesn’t keep you from going out to dinner. It doesn’t keep you from having relationships,” he says. “It doesn’t keep you from a lot of things. But it’s always there.”

They both try to replace the fear with gratitude, as there’s not much else they can control except their outlook. They’re grateful for their families; they’re grateful that the cancer didn’t spread to their bloodstream; and they’re grateful they’ve found people who understand what it’s like to go through this, and how hard it is to talk about.

A number of years ago, Lewandowski was diagnosed with celiac disease. He was quick to turn down anything with gluten in it, lest he get sick for several days. But prostate cancer was different. “I’m not really a closed person. [With celiac], I was like, ‘Yeah, don’t offer me a cookie because it’s poison.’ But this one was so different. It was so…”

“It’s still a ‘down there’ cancer,” says Vaughn.

“The whole ‘I’m less than a man’ thing is a really complicated one,” Lewandowski continues. “But I have to say that some version of that thought does come through. It’s hard when you stop and think, ‘How do I define manhood?’”

Cancer changes the way you see yourself. And although there’s obviously nothing shameful about having cancer, because of the personal nature of the disease and our cultural conceptions of masculinity, many men admit to feeling a stigma about prostate cancer. Lewandowski didn’t tell most people about what he’s been going through until he recently participated in the Movember fundraiser. Both men acknowledge that it’s a strange way to feel, and they both know that you have to push yourself past this attitude. Vaughn admits that part of the reason why he wanted to help other men with their struggles was so that he could also work through his own issues with the disease.

“Something I really, really, really struggled with myself is that when you have your gallbladder taken out, you’re not labeled a gallbladder survivor. And when you have an appendectomy, you’re not an appendectomy survivor. But somehow, you take out this other gland that’s cancerous… you’re a prostate cancer survivor,” he says. “I was like, ‘I’m not a survivor. I had this surgery. It was an event for me.’”

He just doesn’t like it when people call him a hero — he’s too modest and self-effacing for that. But then he remembers to be grateful that he’s still here having these conflicted feelings. “You come to realize, especially as time goes by, that people don’t get out of this alive. Then you start to realize, well, I did, [but] by the grace of God there go I. So I guess I am a survivor. I did survive,” he says. “And so, that reminds me of my role to play here.”

Lewandowski is grateful he had a friend to talk about it all with, and now he wants to do the same for someone else who just joined the unwilling brotherhood, as he’s signed up to be a MENtor. So far, it’s just been a few emails with his mentee, but he’s looking forward to making someone feel less alone.

“When you’re able to do that and help someone else, it helps you too,” he says. “I mean, the reason I said yes to this conversation is because I’m talking about my cancer and that’s helping me process it. This is just another opportunity to do that. For me, this is good. It’s good to talk about it.”

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