Episode 4: Our Prostates, Ourselves

I mean when you go to a dinner party and you're standing over there, you know, at the r sort of cocktail portion of the evening and you meet a person uh even after everything that you've been through and are you really leading with the prostate in your conversation with the guy next to you? You know, it it's interesting now with me, since I'm so

well identified with the prostate, people uh come and they begin the conversation talking about the prostate. Good one. Yeah, well I listen, I only hope that I can get there someday. PRX. This is Mr. 80%, a podcast about living, dying, being a man, and making hard choices. I'm Mark Shanahan, and this is Episode 4, Our Prostates. You coast along making great strides with each lucky roll of the dice, and then bam. You land on a chute and slide all the way back to the beginning.

That's pretty much how I'd sum up my Odyssey with prostate cancer. Not that treatment is a game of chance. You don't roll the dice and hope for the best. You don't find out you have prostate cancer, walk into a hospital and say, Take my prostate, please. You need to educate yourself like your life depends on it, because it does. But that doesn't inoculate you from setbacks. The truth is, you can read all the books and meet all the doctors and weigh all the options.

You can be a goddamn model patient, cagling 24-7. And still, you might get a call from a restricted number. while watching a little post op west wing. And by the time you hang up, you feel like the earth has cracked open. And there you go, tumbling down to square one. And being back there, it feels even worse than when you were there in the first place. That's my story anyway.

And I'm hardly alone. Prostate cancer is ubiquitous. Almost 200,000 men in the US will be diagnosed with it this year. Many more have it right now and don't know. So feels like a good time to introduce you to a few other guys who've played shoots and ladders.

Prostate cancer might not be about chance, but it is about odds. Odds of getting it and of surviving it. With the best possible advertisement. If your father had prostate cancer, like mine did, the risk of getting it is higher than it is for the average guy. And if you're of African descent, the Prostate Cancer Foundation says you're 76% more likely to develop the disease than if you're white. 76%.

And if both are true, a family history and you're black, well that's a lottery ticket nobody wants. Tom Farrington was holding one. My father had prostate cancer. My father died of prostate cancer just three months before I was diagnosed. And prior to that, I lost both my grandfathers to prostate cancer. Well, before Farrington became in demand at cocktail parties for prostate advice, he had a long and successful career as an IT entrepreneur and executive.

Having seen prostate cancer up close for much of my life, I knew prostate cancer only as a killer. So I immediately associated this diagnosis with the fact that I'm the next one in line. to die from prostate cancer. That was almost 20 years ago. When I meet him, Farrington is a fit and dapper guy in his mid-70s. He has a kind face and an easy laugh. He's a man who's used to knowing.

So being blindsided by the seeming inevitability of prostate cancer was especially rough. I really blamed myself as a man that was supposed to be uh pretty pretty knowledgeable for having such a lack of knowledge about a disease that have been so rampant within my family. Finding out you have cancer is like being kicked. Finding out you should have been looking for it is like being kicked when you're down.

What did you know about this thing? Literally nothing. Literally nothing. I never had a conversation with my doctor about. prostate cancer or prostate cancer risk. So when I was diagnosed, I didn't know what it all meant. I didn't know anything about the different prostate cancer treatment. Farrington was alarmed. What else did he need to know about the disease? What else did black men need to know?

We died a rate two point three times greater. I did not have that knowledge before I was diagnosed and even when I was diagnosed. Farrington's urologist told him his prostate had to come out. The prognosis was bleak. We had talked about surgery and the implications of surgery, and he didn't hold back relative to the potential side effects. In fact, he had let me know. that uh because of the stage of my disease, that I would have some pretty severe side effects. And just to be

Super clear. We're talking about incontinence, we're talking about potential impotence, sort of the twin evils of prostate cancer treatment. And Basically the representation to you was that some or all of this is part and parcel of being cured. Well, my doctor was very clear that I was not a candidate for nerve sparing surgery. So he's saying, hey, after this you will be impotent. You will be impotent. How do you like those odds?

So imagine, you've just buried your father, whose prostate cancer proved fatal. Your own disease is so advanced that the surgical technique that preserves sexual function? It isn't an option. And the only given, according to your doctor, is that even if you survive the cancer, your sex life won't. What would you do? Probably what Farrington thought he'd do, have the surgery. After all, no one cares about your erections when you're dead.

If this is necessary to save my life, then I have no option. I will go with it. And initially, and right up until the eleventh hour, that was your decision, correct?

Up until 11th hour. And then Farrington stopped the clock. Well, actually my doctor put it this way. He said, Tom, I think I can save your life with surgery, but I cannot save your sexual life. And I said, Doc, you didn't tell me you could save my life. You said you think. And you can't save my sexual life. So I don't see anything positive there. The day before his scheduled prostatectomy, Farrington told his doctor he was walking away. And he looked at me and said, Well, what are you gonna do?

And I basically said, I really don't know. I don't have a another plan right now, but I need to take some more time to develop a plan, get more knowledgeable, and I will either come back to you, I'll come back to you and let you know. I may be back for schedule, I may not. Tom Farrington didn't like his odds of coming out of surgery cancer free. Turns out he was right. It was determined that there was a great chance that a prostate cancer may have already left the gland itself.

And that was really one of the reasons that I questioned surgery. Because if prostate cancer had left the gland, then surgery would not clean it all up, and I would have to come in for another form of treatment. So we settled on breaky therapy. Radioactive seeds implanted in his prostate. Next, he underwent a round of external beam radiation, aimed where the sun don't shine. And guess what? It worked.

Farrington was cancer free, his sexual function intact. Good ending, right? Well, actually, for Farrington, it was kind of a beginning. The prostate cancer survivor was about to become a prostate cancer active. We'll be right back.

Tom Farrington emerged from radiation therapy cured, but also plagued by nagging questions. Why didn't he know more about prostate cancer before he was diagnosed with? And why did his primary care doctor, over years of routine prostate exams, never mention his risk for developing the disease? Why didn't his father, or any of his five uncles who'd also had it, ever talk about it? He came to a sobering conclusion.

Silence kills. Silence really kills. I mean if you're silent, that mean not only are you not sending out information, that means you're not getting information back. And so lack of knowledge kill. Mistrust of doctors doesn't help either. Knowing what you and I know about the incidence of prostate cancer in the black community, why was there not more outreach? Why was it not a more aggressively pursued in the black community? And at the same time.

In the community itself, was there some reluctance to sort of interface with hospitals and doctors? Well y yes, I think absolutely. There's a historical I guess reluctance. There's some doubt about the intentions of medical providers, medical community. Would you use the word suspicion? Uh I would certainly use the word suspicion. And so

That keeps a lot of people away. I think the providers themselves, the the hospitals and the different centers, definitely could have done more. And they still need to do more than is being done.

I put this concern to Dr. Drew Pinsky. I went to a few prostate cancer support groups. You know, nobody there of color. What's the deal? I have been going to the wives and daughters, particularly the daughters have been very effective, uh, of the men.

Because going directly to men, I've had zero impact as far as I can tell. They are more likely to get aggressive cancer, they're more likely to get cancer, they're more likely to die of prostate cancer. It is a scandal, as far as I'm concerned. Is it also not true that w the outreach? Is not that great.

The organizations I'm involved with, that is priority one. So I I maybe we're not effective. I think that's the issue. Because it is largely a bunch of white people making these decisions, maybe it's not effective at getting into the the community we want to reach. There is deep, profound, painful concern about this and and ample little progress. So please, if you have any ideas, I'm all in. Tom Farrington's got some ideas. In two thousand one he wrote a book about prostates.

It's called Battling the Killer Within. And two years later, he founded the Prostate Health Education Network. Our motto is Knowledge is the best defense against prostate cancer. Farrington's organization tries to reach black men in all sorts of ways, including creating support groups just for them. He hadn't seen many, or any, black faces at the ones he'd been to.

And in the great tradition of parents who slip kale into their kids' smoothies, he found a unique way to start a dialogue about prostate cancer. He connected with a North Carolina playwright named Gary Davis. And luckily, he was working on a new play called Dead is Bull. Is something wrong with Pops? No, guys. Uncle Baby asked me to come over. I invited her over so she could explain your father's condition. Oh. And he gave me the opportunity to work that script.

But this light-skinned Joker right here may not get it. Uh-uh, I'm trying to understand because he ain't black enough. The play, which has some good laughs, centers on three generations of men in an African American family and a patriarch with prostates. Let's just say his sons are not in a hurry to get a digital rectal exam. So what happens at a checkup, Doc? All right. What's the prostate? Prostate cancer is a cancer that begins in the prostate tissues of the prostate gland. But where is that?

Well, it's located below the bladder and in front of the rectum. Oh, oh, oh, oh, oh, no. In 2018, Daddy's boys began a tour of 12 American cities. او او او او او او But Farrington isn't doing this merely as entertainment. He's an entrepreneur and a businessman at heart. He wanted data. We surveyed the audience before they leave with our play bill. We put a survey form in. We let the audience know at the intermission and other at the end of the play that we really need their feedback.

And it shows that over seventy percent have increased prostate cancer knowledge uh when they leave that place. and that nearly one hundred percent would recommend it to others and even more interesting, seventy to eighty percent. Would like more education. Bingo. But still, we have a lot to do. There's more that needs to be.

During my ordeal with prostate cancer, not many of my guy friends came up to me wanting to talk about it. And when I tried to talk to them about it, they'd nod, look concerned, and then switch topics. Like they might catch it if I kept talking. But this next guy, he causes something of a sensation when he shares his story. That's because it's uplifting, you might I'm Bill Tinney, I'm 78. I am a retired school librarian, media specialist, information technologist. Did that for 39 years.

and I'm enjoying retirement. I got what I call the full Bill Tinney experience at a prostate cancer symposium I attended about two years ago. I was sitting in the back of a session devoted to erectile dysfunction. The room was packed. Tinney, with a battle cry worthy of brave heart, stood up and told the standing room-only crowd that penile implants are technology's gift, if not to mankind, then to manhood. He should Like Frank Sinatra's regrets, Bill Tinney's had a few. Implants that is.

And I recalled that you talked about one, two, three are you on your third or fourth? That time I probably would a had had the third one. Which made me think two things. I gotta meet Mrs. Tinney. And tell me more. What a great place you have here. Oh, it's warm today.

It's a little too warm for me. Yeah. Um we don't have central air, but we have the air conditioning on the floor. So one summer afternoon, I dropped by Bill and Cindy Tinney's well-appointed home south of Boston. And one of the first things I noticed was the sex swing. Just kidding. One of the first things I noticed was a wall with frame certificates from the Mayflower Society, of which Bill was outgoing governor.

To be a member of the Mayflower Society you have to be a direct descendant of one of the hundred and two passengers on the original Mayflower Boys. And because the fourth hundredth anniversary is coming up of the landing of the Mayflower. We're commemorating that. We're not celebrating it. We're commemorating that. What's the distinction?

Well we we harm some folks. Uh w obviously we harm some folks. I didn't you didn't well you don't know. You I didn't have anything to do with it. How do you know? Well Bill and Cindy Tinney met in church. And married nine months later. I'm Cynthia Tinney, and I was a school teacher for 30 years, and before that, I worked in business. I've been married to Bill 50 years. Four years.

And you would say that those have been fifty four fairly entertaining years? Oh entertaining. I'll say. My tour includes a peek inside the master bedroom, which Tinney refers to as the Playroom. We had a great life. We were both healthy. We had our home to ourselves, children were out and married, no polls on our time, so we enjoyed each other's company. Is that plain enough? You're smiling, yes, I guess it is.

Sex isn't a conversation one expects to have with a pair of Mayflower descendants. But who knows? History's full of surprises. And so is Bill Tinney. He may not look like the guy in The Joy of Sex, but trust me, that dude has nothing on Bill Tinney. So when Tinney, who was 57 at the time, realized that the surgery to remove his cancerous prostate had also taken away his ability to sustain an erection, he felt gutted. His doctor prescribed patients, not Viagra. That he told him.

But Bill Tinney is a man of action. I am the master of my fate. I am the captain of my soul, which comes from Invictus. And indeed, if you can't take that role, if you can't be master of your fate, if you can't be the captain of your soul, then I don't know what there is for you.

Wait and see was never going to be part of Tinny's plan, so he went DIY on his E D. I had been by that time to enough support group meetings that I understood the purpose of a retention ring, which in in the vernacular is a caulk ring. I've tried elastic bands. And I re achieved terrific erection, but my penis was swollen to the point that I couldn't get the bands off. So fortunately I had a pair of bandages.

And I got them off, but I didn't try that again. I'm no medical expert, but you probably shouldn't try that either.

Two years after his prostatectomy, Tinney returned to the urologist who'd done the procedure. He'd had it with being impotent. Recalling this conversation, Teenney's entire affect changes. The sunny disposition and twinkly look in the eye, they vanish. I can remember it vividly. It was a cold January snowy afternoon. His office windows looked up onto the hills just before the quarries and Quincy it was bleak and dark. Tinny had done his homework.

He knew that men who suffer from impedance for all sorts of reasons can be helped. He told his doctor that he wanted penile implant surgery. Your penis, and I I made this up. Your penis is not the sword Excalibur. And your scrotum is not the Holy Grail. They are body parts. Same as your eyes, your ears, your heart. Any one of you would have eye surgery if it meant.

Preserving your vision. If you were diagnosed with a failing heart valve, you would have heart surgery. What is the fear of having somebody surgically Go inside your penis. But Tinney's doctor wasn't having it, he says. And his next remark angered me. By then I was fifty-eight, soon to be f fifty-nine. And he said to me, I don't know why a man your age is so interested in sex anyway.

No one sex shames Bill Tinney. Thinking back to my childhood, which would have been in the forties, late forties, early fifties. young men, boys, were taught, You didn't touch yourself. You certainly didn't let anybody else touch you. You covered yourself in the locker

And I thought to myself, this is ridiculous that we're saddled with this. Tinney found another doctor, one who did perform the penile implant surgery, and for the first time in more than two years, he was able to make love to his wife. The first time.

Our first time, period. Oh I suppose there was a certain amount of Fireworks. And afterwards Cindy was in tears. I said why did I do such she said, No, I just never thought we'd be able to do this again. If ignorance about prostate cancer inspired Tom Farrington to activism, impotence inspired Bill Tinney to a kind of evangelism. He practically barnstormed across New England, talking up the company that makes his penile importance.

He spoke in Maine, Vermont, Connecticut, and all over eastern Massachusetts. At each support group along the way, Tinney urged the despondent men he met to make like the Nike slogan and just do it. Meaning, you know, get a penile implant. And the first time I went in, we sat in a round circle. There were probably 30 guys in there. And the shock was when one of them said that he would rather have died of prostate cancer.

than become as he was at that point, totally impotent. He had tears streaming down. And there were other men that nodded their heads and said yes, that indeed that was their feeling. This is a despair that Tinney knew well. Being impotent. Reaches down into the depth of your very being. It reaches down into the bottom of your soul. Intelligent men do not want to think of themselves as the function of their penis. Yet if you can't get an erection.

Whether you're going to use it or not, there's something missing from you. So he spread the word. Faced with a man in tears, Tinny delivered the gospel according to Bill. And he showed me a picture of his wife, and she was beautiful, and she was young. And he said, I'm going to lose her. If I don't do something. And he said, I've thought about suicide. And I said, You've got to go and have this done. He did. And he came back in about six, seven weeks later. He had first used it.

And he looked like a kid that had just come out of a toy store. Tinny became a bit of a celebrity on the support group circle. Sales reps from the implant company even came calling. Was it true they wanted to know that he was on implant number four? They both looked at me and they chuckled and they said, You're wearing them out. and I put my hand up in the air with a clenched fist and I said, Yea, Bill

Yay, Bill, indeed. The remark I generally made was, well, before when I was in the gym, I used to wear the towel around my waist. And now I wear the towel over my shoulders because I look good.

When you hear a 78-year-old man speak with such fervor about a prosthetic device implanted in his penis that makes him feel whole again, naturally you get on a plane and go to the factory where it's made. Boston Scientific was founded 40 years ago in Watertown, Massachusetts, outside Boston. Today, the plant where Bill Teeny's penile prosthesis is made is located in a business park 20 minutes outside Minneapolis.

It looks like any other office building. You'd never guess that workers are inside assembling devices that restore a guy's mojo. But that's what's happening. So you're a m you're a Minnesotan? I am a Minnesotan, oh yeah. You betcha. Corey Hamill is a scientist and a director of product development for Boston Scientific. He says describing his portfolio can be tricky. Well I usually explain what do I do I'm in medical devices and then they ask me, oh what kind? And then I say I'm in urology.

And then they say, Oh, like but what kind? And I'm like, Well, let's have a few beers first. Before I can take a look around, I have to put on a sterile jump. Plastic goggles, a mask, and hair and shoe covers round out my ensemble. It's a look Merrill Street perfected in the movie Silkwood. In this in this area, we're making a lot of the individual sub-components or the subparts. So there's a molding deck up here, there are dipping stations.

and extruding stations behind us. These are making all the individual parts that go into the final device. Women, and it does appear to be mostly women, also covered head to toe, work with studious concentration. You'd think they were in a nuclear plant handling spent fuel runs. But love machines like Bill Tinney are placing orders all the time. Tens of thousands of implants are coming off the factory floor every year. Imperfections are the enemy, and production standards are high.

It's mostly uh q-tips, rubber gloves, uh pliers. Uh some sort of solution that they're rubbing all over things. It's extremely sanitary, antiseptic. Hamel explains that there's a range of penile implants. The point of each is to imitate a man's natural hydraulics. It has two cylinders that go into the penis that can be inflated and deflated. Inflated for rigidity and then deflated for concealability. It is Inflated and deflated by the use of a pump and this pump is placed within the scrotum.

And so the patient will pump the device up to inflate their cylinders and then we'll hit a release valve and then it will transfer the fluid that was normally in the cylinders back into the reservoir. That reservoir, usually filled with saline, is surgically implanted in the man's abdomen. And just wait for the next generation of these things.

A phone or a little Fitbit on your wrist, something like that, where it's just a remotely controlled device. That uh when you want an erection, you can just tap on a almost erection on demand, but with very little effort. You know, very similar to what the body does. The body literally just takes blood and engorges the phallus for intermission and then it uh dissipates for every day walking around.

You said intermission, but you meant intercourse? Intermission, intercourse. Uh interchangeable in our field. Intromission is technically the first part of intercourse, I believe. Myself? I've always enjoyed a good intermission. Next time on Mr. 80%, hello manopause. I think there was one time when I just forgot to unload the dishwasher and It was like during a time when you were going through a mood swing or you would

You have to use your head, Julia. Like think about your future. Think about what you want to do. When you have a job, it's like that's not gonna fly. You'll get fired. I was like, fuck that guy. Nobody makes my sister cry. I was done. Done with Mark. Forever. Mr. 80% is a production of the Boston Globe and PRX. Kelly Horn wrote and produced the show with me and Scott Hellman, our executive producer.

Audio Mixing, Sound Design, and Mastering by Tim Skogue. Brian McGrory is our executive editor. Our music is from APN. One quick disclaimer before we go. I'm not a doctor. Not even close. So nothing in Mr. 80% should be construed as medical advice. If you have questions about your prostate, don't call me. Call your doctor. For more about the show, visit bostonGlobe.com slash prostate.

There's additional information about prostate cancer. Meet some of the people from the episodes and read a magazine essay I wrote about my Odyssey. And if you like the show, leave us a review on Apple Podcasts. I'm Mark Shanahan. Thanks for listening. There are some guys who leave it partially inflated because they like the looks of it. Wow. Then there are some guys that don't have to. I'm not going there. I I've never really gotten into that discussion. But yeah, that's a fact.