If you’re a young man diagnosed with prostate cancer, maybe your first thought is, “Am I going to die?” And then, “What’s the best way to treat this?” And then: “Will I ever get my life back?”
And here’s the thing: By the time they get to that third question, a lot of men get complacent or worn out, or discouraged. They accept the new normal. They figure: “The cancer’s gone. Yay! I should just be happy for that.”
And if the cancer is gone, thank goodness! What a blessing! There are many men who would give anything to be in your shoes. But what if you’re in your late forties, or early fifties, with decades ahead of you? Is it wrong to want more?
Hell, no! Listen to these words: It is not wrong to want to have your old life back after treatment for prostate cancer.
So, if you have had surgery, and you’re having persistent incontinence, talk to your urologist. There are lots of things you can do, including biofeedback, Kegel exercises, or surgical options that we will discuss in another post.
If you are having persistent trouble with sexual recovery, there’s help for you, too. A lot of men, once their cancer is cured, are basically turned loose by their urologist: be free, and enjoy your life. But they need extra help, which starts with penile rehabilitation. We have discussed that here and here. Options include pills (there are several, including Viagra and Cialis); penile injections; a vacuum erection device; and a penile prosthesis. In this post, Johns Hopkins urologist Trinity Bivalacqua says: The prosthesis is “just phenomenal. Pills like Viagra are popular, because they’re easy to take, and when they work, they’re great. But the next most popular option is the penile prosthesis, and it works as advertised 100 percent of the time.” I also commented in that post that “It also looks 100 percent natural. It’s not some cyborg penis. For all practical purposes, it is your actual penis – just more reliable.”
But I’m not a guy, and I’m not a urologist. What do I know? Well, I’m proud to say, I now know Serge Thomas. Although I have heard about penile prostheses for years from urologists, I have never talked to anyone who actually has one. Serge is not only willing to talk about it; he’s written a book. It is funny, very candid, and optimistic.
“Out of the Blue”
Briefly, Serge, who lives in Michigan, was diagnosed in 2012 at age 52. He had no family history of prostate cancer; the diagnosis, he says, “came out of the blue,” and the cancer wouldn’t have been found at all if he hadn’t been seeing a urologist for low testosterone treatment. The urologist insisted that Serge get his prostate checked every year. In 2011, his PSA had been 1.9; at his next visit to the urologist, it was 3.8. Two weeks later, another test came back at 4.1. “This fit all the criteria for a serious situation that shouldn’t be taken lightly,” Serge recalls. “Well, I decided to take it lightly,” and he spent a month “resistant and in denial. This could not be happening to the ‘macho-me’! This would pass, and the reading would eventually return to a normal range.”
Serge’s thoughts will probably seem pretty familiar to any man who has gone through the diagnosis of prostate cancer: “You know us guys and our manhood. Nothing can get in the way of it and nothing will compromise it. And the prostate removal thing: just NO!” Better not to know, he decided, because if there was cancer, “my choice is a life with a good and functioning prostate; not life without a prostate, because … if I lost it, it’d mean that I’d lost my manhood, too. My wife would notice and nothing in our life of intimacy would be the same.” Serge decided “to stay the course, without any significant intervention or surgery.”
Then his wife, Lisa, found out and nixed this plan. Serge got an ultrasound biopsy immediately. Then, before he even found out the results, he nearly died – from sepsis, a rare complication of transrectal biopsy. He was hospitalized with a 104-degree fever and terrible chills. A few days later, his urologist came to his hospital room to deliver the biopsy results: Serge did, indeed, have prostate cancer, Gleason 3 + 4.
Serge did his due diligence on what to do next. He decided on surgery, then did further research to find an excellent surgeon – one with expertise and a proven track record in performing radical prostatectomy. He chose Mani Menon, M.D., of the Henry Ford Health System in Detroit. Before surgery, a therapist on Menon’s team met with Serge to talk about penile rehabilitation after surgery, “the goal being to restore organically stimulated erections” – never a problem before, Serge notes. “I was known to get erections at three years old, while I was watching Elizabeth Montgomery as Samantha on ‘Bewitched.’ So at this time, my known organic erections were working for the past 49 years!” The therapist told him that the rehabilitation would begin with a low dose of Cialis. “She explained that it is extremely important to keep a steady supply of blood flowing to the penis and that this would be the initial start of penile rehabilitation.” Then, at two weeks after surgery, “we would start with penile injections, the goal of which is to keep up with the regular engorgement of the penis, as this would lead to eventual organic erections,” which would occur “within two years of the start of the injection protocol.”
Serge had confidence in Menon and his team, and this “gave me a peace and confidence to move forward, no matter the outcome and its consequences.” He spent a lot of time in reflection during this period, and came to come conclusions, particularly: “Finding the most special person in my life, and entering marriage with her held some implicit guarantees that I was not going to give up on. In our marriage, I effectively warranted my love, friendship, care, and support in all forms and whatever I would be capable of physically, intimate and otherwise. I was fully intending on delivering on each one of those commitments.”
What if his erections never came back? Lisa told him it didn’t matter, that “sexual intercourse is only one form of intimacy, and that we have many ways to be intimate. In fact, she said that it wouldn’t matter to her if we had intercourse ever again.”
Serge didn’t know what to think of this: “First, I’m thinking that this is some form of compliment – or no, in fact, it is the opposite of a compliment, even an insult! That it’s of no consequence whether we have sex/intercourse again? Whoa! A lot goes through a guy’s mind in such a situation!”
Fast-forward a few months. The surgery went well, and Serge recovered continence. However, he was not so quick to recover erections. The pills did not work for him. “No benefit,” he says. The injections, which he discusses in detail in his book, allowed Serge and Lisa to resume intercourse, and all was well for about six months. Then the effects of the injection “became only marginal,” Serge recalls. “In many cases, the erection would be like on half-power and inadequate for penetration. I became exceedingly frustrated, while Lisa became exceedingly understanding.” The therapist suggested that Serge switch to a different formulation, a “tri-mix” instead of the “bi-mix” he had been using. The tri-mix not only caused terrible pain; it produced a four-hour erection. The therapist told Serge that some men can’t tolerate the tri-mix, and advised him to go back to the bi-mix.
The Danger Zone
“We had sub-standard performance until I decided that if one injection doesn’t work, how about one and a half times the normal volume of the drug for the injection? And if that doesn’t work, how about twice the normal prescribed volume of the drug? I now had begun to operate in the danger zone.” This strategy did work, “and Lisa and I were the beneficiaries of its working.” But this resulted in priapism, prolonged four- and five-hour erections, including a nearly seven-hour one that resulted in a trip to the emergency room. “I was like a crack addict,” Serge recalls. “I wanted the sex and intimacy with my wife at all costs. So what if I use a little more juice, I told myself. Wrong!” In early 2014, Serge noticed that after the injections, his penis was “curved up and vertical.” He had developed Peyronie’s syndrome. “My God, wherever I moved, that thing was looking at me!”
After the year and a half of injections, the penile wall had built up scar tissue, “so when the erection occurred, it was constricted by the scarring and caused a pull and a curvature.” His therapist advised him to stop the injections immediately, and referred him and Lisa to a sexual and marriage psychologist – who, in turn, referred him to Dana Ohl, M.D., director of male reproductive urology at the University of Michigan Medical Center. Ohl told Serge that he was a candidate for a penile implant – a prosthesis.
Ohl said that by stopping the injections and moving forward with the penile implant, this would correct the curvature, allow him to regain the ability to generate regular and firm erections, and restore the level of intimacy with Lisa that he previously had enjoyed.
Serge asked, “How does it work?” Ohl told him that two polymer tubes would be inserted into the cavernous areas on both sides of the penis. A small reservoir of saline would be tucked in the muscle wall of Serge’s abdomen, and a ball-shaped pumping device would be placed in his scrotum, and whenever he wanted an erection, “you pump up the ball-shaped device in your scrotum.” Afterward, “you depress a little button on one side of the ball-shaped pump device, and the saline flows back into the reservoir and the penis returns to normal.” The model Serge would receive is called the Coloplast Titan.
“Does the thing ever wear out?” Serge asked. “No, you’re good for the remainder of your life with this, assuming I do the surgery,” Ohl explained. Serge felt an overwhelming sense of relief: “Oh, my God, no more f—ing needles,” he thought, and then, with more enthusiasm than he had felt in two years: “Yes! Sign me up!”
Serge had the surgery. The implant was covered by insurance – in large part, he says, because Ohl “sat in front of Congress and explained that reconstructive breast surgery after breast cancer is akin to a male having an implant after prostate cancer. Out of pocket, it was 60 bucks for me.”
Off to the Races!
There was a six-week recovery period. And then, as Serge puts it: “It was off to the races! What to say other than life is absolutely great? Lisa and I were again making music. To this day, over five years later, we are enjoying ourselves with regular, recurring intimacy of all forms. I’m back in the game! Actually,” he jokes, “the implant works so well, it would have been better to have it earlier in my life, like at 18 years old, and without the prostate cancer!”
This is why Serge is telling his story. He wants to help other men. But he’s doing even more: through Dana Ohl, Serge learned about COP-MICH, a collaborative project between the University of Michigan Medical Center and the University of Copenhagen Medical School, to help obtain semen from paraplegic or otherwise injured men and “use it to help those men and their wives have children, which otherwise would be impossible.
“Dr. Ohl had done such a great thing for me in restoring the physical intimacy in my relationship with my wife,” that Serge wanted to pay it forward. “These teams on both sides of the Atlantic are giving husbands and wives the possibility of having children and growing families.” Serge supports this project, and is also donating a portion of the proceeds from his book to COP-MICH. “This is not only about a couple’s happiness in the bedroom; it’s life-changing.” Because of the help he received, “I feel absolutely compelled to help them in any way that I can.”
In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. You should start at age 40. Many doctors don’t do this, so it’s up to you to ask for it.
©Janet Farrar Worthington