The Prostate Monologues

by Jack McCallum

  “A couple we’re close to went through the same thing we did,” says Sandy. “The man had always lived and died by his sexuality, but now we don’t even talk about it. And talking about it helps a lot.”

  TAKEAWAY: Sandy’s conviction that her husband would be dead if not for a PSA test cannot, of course, be proven. He did have a family history of prostate cancer and his PSA did rise from 3.5 to 5.4 in four years, a significant velocity. There is a reasonable argument that because of the family history he should’ve been tested when he was 40, and there is a more than reasonable argument that a 3.5 reading at age 47 should be taken more seriously than the same reading at age 67.

  “Our family physician either missed or did not recognize that number as high for Bob’s age,” says Sandy. “At that time, only PSA readings over 4 were highlighted on the computer readouts. Diagnoses would be better if the computer made age-related adjustments.”

  Gene Wieder

  AGE AT DIAGNOSIS: 68

  PSA LEVEL: 3.8

  GLEASON SCORE AND BIOPSY REPORT: 4 + 4; confined to one core

  DECISION: Radiation

  OUTCOME: So far, so good

  After my articles were published, I found myself in the disconcerting position of dispensing advice. When Gene first contacted me, he wrote, “I have chosen to start radiation treatments but am reconsidering my treatment decision. So please help me convince myself that I made the right choice.”

  I wrote Gene back with my predictable reply—that I am not a doctor—but did mention that I had heard from several men who had done quite well with radiation. Here is Gene’s story.

  “My Gleason score was 4 + 4. My urologist considered that high and that’s why he recommended radiation. He said that even if I’d chosen surgery he would’ve still recommended follow-up radiation in case the areas around the prostate were cancerous. I don’t recall him mentioning my age (68 at the time) as being a factor in the treatment decision.

  “My nine-week course of radiation went well and my follow-up PSA was 0.1. I have no incontinence issues. The urologist has me on Trelstar [triptorelan], a treatment received via injection. It blocks testosterone production. But it has reduced my sexual function to zero and causes me to experience an occasional hot flash. It has also taken a few yards off my drives, but doesn’t seem to affect my putting one way or the other. In other words, I still miss too many.”

  TAKEAWAY: Gene was in what Dr. Walsh calls “the gray area of treatment.” His Gleason 8 was a significant reading, but his PSA and his cancer staging (T1c and not T2c or T3) suggested that he did not have high-risk disease. He could’ve had surgery since he was in otherwise good health, but his age (creeping up on 70) and that troublesome Gleason may have convinced his doctor that radiation was best.

  When you’re in “the gray zone,” Dr. Walsh recommends that you ponder the worst-case scenario for each option five years down the road.

  If you choose surgery, try to imagine what life would be like if you were impotent and incontinent, for they are its worst-case outcomes. Although prostate removal doesn’t always get rid of all the cancer, it does most of the time.

  If you choose radiation, try to imagine what life would be like if your PSA began to rise, which happens much more often with radiation and would require additional radiation or hormone treatments. That’s why Gene’s doctor already has him on Trelstar.

  One thing to remember is that even urologists and surgeons who used to be wary of radiation now say that it is an excellent and indispensable modality in many cases. But Gene’s story illustrates the blessed curse of prostate cancer: Having multiple options seems preferable to having just one. But it also makes your decision more difficult.

  Jack Littley

  AGE AT DIAGNOSIS: 60

  PSA LEVEL: About 1

  GLEASON SCORE AND BIOPSY REPORT: 3 + 4; involvement in one core

  DECISION: Cryotherapy

  OUTCOME: Mixed

  When I was a freshman at Oakcrest High School in southern New Jersey, I attended my first scholastic wrestling match. Jack Littley, a junior and already an established jock at our school, was a 136-pounder who went up to 148 to take on a star from Atlantic City High School. Jack crushed him. The memory stayed with me. The captain of both the football and wrestling squads, Jack was one of the toughest competitors I’ve ever known.

  Jack married one of my oldest friends, Sharon Suprun. It was from Sharon that I learned about Jack’s battle with prostate cancer that, like so many others, shouldn’t have been as bad as it was. Here is the account from Jack, who is the chief performance officer for a technology firm in Virginia.

  “My younger brother had prostate cancer, so I figured I had better get checked. My PSA was low, but the doctor thought I should still have a biopsy because of the family history. My insurance company wouldn’t even pay for the biopsy because of that PSA number. But, sure enough, it came up positive for prostate cancer.

  “You know how it is, right? You start to feel a time bomb in there. I felt like I didn’t have time to think about it, but I really did. Unfortunately, I did all my research after the fact, not before.

  “My brother had had radiation in Philadelphia, but I didn’t want to go up there. I was thinking about robotic surgery, but then there was some publicity about a real bad incident when somebody almost bled to death during robotic [which usually reduces blood loss], so I ruled that out. Then I checked with my minister, who had had radiation seeds [brachytherapy], but he had a problem with anal leakage.

  “My urologist was an older guy, but I trusted him—sort of—and he started talking to Sharon and I about cryotherapy. Showed us a couple of films, went through the positives—didn’t hurt the nerves, gets rid of the cancer, on and on—and I said, ‘Okay, let’s just get this over with.’ So I had the procedure. It was less than a month from the time I had been diagnosed.

  “The post-procedure time was a lot more difficult than I had been led to believe. My testicles were the size of grapefruits. I always wanted to have big balls, but not like that. The urologist told me, ‘Go home and squeeze the fluid out of them.’ Really? That went on for about six weeks, but they finally came down to regular size.

  “After that I couldn’t get an erection. Viagra and the other things didn’t work, so I started giving myself a shot directly into the penis. The needle goes all the way through, but, oddly, it doesn’t hurt. It worked a couple of times, didn’t work other times, and eventually it became . . . I guess the word for it is ‘demoralizing.’

  “So the urologist gave me a pump. It worked in his office, but then I bought one and it didn’t work. Eventually, that became demoralizing, too. I am now on Cialis [tadalafil] for daily use and it’s not working very well. One thing you think about before the procedure is ‘Well, if something happens with ED, I’m 60 and we’re not having sex as often as we used to, so how much am I going to miss it?’ Well, that is true. You don’t have it as often. But you do miss it.

  “And when I manage to have an orgasm I sometimes feel a burning sensation. It feels like it’s in the rectum, but it’s probably backwash into the bladder. I also have an irritation in the perineum [the area between the testicles and the anus]. Some itching and pain when I exercise. But all the scopes and everything always come up negative, so it must just be some kind of reaction to the procedure.

  “All in all, it’s been a pretty negative experience, a lot more negative than it should’ve been. But my PSAs are negligible, I don’t have cancer, and I’m alive.”

  TAKEAWAY: As is so often the case, both sides of the PSA debate can claim Jack.

  One side: He shouldn’t have been biopsied in the first place and then he rushed into getting harmful treatment.

  The other side: He never would’ve discovered his cancer had an alert physician not insisted upon his getting a biopsy because of the family history. And he had cancer despite the fact that his PSA was extremely low.

  Jack, who has an engineering degree from Rutgers University, is a
smart guy. He was smart in the classroom and smart on the athletic field. But like thousands of others, he felt pressured to do something after he got his cancer diagnosis. He heard bad things about two procedures, so he went with cryotherapy without doing enough research on it, or, more to the point, enough research on the doctor who was doing it.

  Jack’s story should not be considered a blanket indictment of cryo. I can only tell you that on my interview scale it did not come off well because of the high possibility of side effects. But had Jack put himself in Dr. Aaron Katz’s hands, perhaps it would’ve turned out differently.

  The shot to the penis that Jack describes is not an uncommon remedy. The medication dilates the arteries and allows blood to flow in. Urologicalcare.com (which does not appear to be in bed with the companies that manufacture the medication or the injection kit) reports that 80 percent of men achieved erections in clinical trials. Well, maybe that’s accurate, and Jack did say it worked for a while. But as Jack found with the pump, the success didn’t last, and it seemed more trouble than it was worth.

  But his life is not over. He continues to share good times with Sharon, and he’s picked up some wisdom along the way.

  “The trouble is that most doctors get locked in on a solution,” says Jack. “What we really need in medicine is an adjudicator, someone who’s in the field but not a practitioner and can say, ‘Okay, here are your options, and here’s what is probably best for you.’ Instead, I got very biased opinions, sort of like mutual fund salesmen pushing me in the direction of their own funds.”

  Richard Grammes

  AGE AT DIAGNOSIS: 66

  PSA LEVEL: 11.5

  GLEASON SCORE AND BIOPSY REPORT: 6 + 7; involvement in 11 of 12 cores

  DECISION: Open prostatectomy and subsequent radiation due to rising PSA

  OUTCOME: Mixed

  The memory of his father’s lost battle with prostate cancer was seared into Richard Grammes’s brain. Here is his story.

  “The radiation treatment my father had was nothing like it is now. It never helped him. He was always sick and always in pain. He had severe bleeding and eventually lost his bladder. He was a big man who dwindled to under 100 pounds. My father was in such agony that he shot himself with a pistol. It was really difficult for my whole family and especially for me because we were very close.”

  Despite that history, Richard did not get his own PSA level checked until he was 66. “I didn’t have any urinary symptoms, no problems at all related to my prostate,” says Richard. “So I was under the assumption everything was fine.” But by the time he got it checked, his reading was 11.5 and a biopsy revealed significant involvement. He chose to have an open prostatectomy with the urologist who was treating him.

  Richard had some incontinence and wore pads for a few months, but eventually got it under control. “But from then on, I was unable to perform in the bedroom,” he says. “Every time I would get close to something happening, I would have leakage and that would ruin it. In retrospect, the one thing I regret was that I didn’t hear more about the sexual part. If I had, I would’ve taken my wife on a trip or something.”

  Still, Richard was initially satisfied with his outcome, especially when his first postsurgical PSA came back at 0.04. But then it started to rise with each subsequent test. “It really left me confused,” he says. “I thought, That isn’t supposed to happen. Then I began to do the research and found that, yes, it does happen.”

  When his PSA reached 0.17, his urologist decided that he should get radiation. At this writing, he is in the middle of a 39-treatment regimen.

  “I’m fine with the radiation, but it’s not without stress,” says Richard. “They have to get three people involved in your treatment. In my case, it’s three young ladies, all of whom are attractive.”

  “Perhaps if your erectile function is ever to return,” I suggest, “it will be during your treatment.”

  “That would be great,” he says. “I wonder what my doctor would do in that case. Probably raise a flag.”

  TAKEAWAY: Richard’s story again highlights the connection between prostate cancer and heredity. He should’ve been tested earlier because of his father’s history.

  And we get from him another comment about his doctors’ not providing enough pre-intervention information about side effects. As Richard notes, it would’ve been nice if he and his wife had been able to enjoy a memorable sexual engagement before the procedure. In fact, that recommendation should be de rigueur. Surgeons must be frank enough to say, “Sex may never be the same after your treatment.”

  The rising PSA level after surgery is not unusual, particularly in cases like Richard’s where the cancer was significant. And the decision to follow up with radiation is standard operating procedure. Although, as I said before, I am not a doctor, it seems as if repeating PSAs to monitor such situations is extremely important.

  Here is a link to an American Cancer Society forum in which men who are facing Richard’s dilemma talk about it: http://csn.cancer.org/node/148932.

  Bob Fink

  AGE AT DIAGNOSIS: 63

  PSA LEVEL: 4.2

  GLEASON SCORE AND BIOPSY REPORT: 3 + 4; involvement in two cores and metastasis

  DECISION: Radiation

  OUTCOME: Problematic

  I was 12 when Bob, a lifelong friend, threw me the first curveball I ever saw. The pitch was coming directly toward me so I jumped out of the way, then watched with amazement as it swooped over the plate. Fifty years later I can still see his diabolical grin out on the mound.

  Because of the timing of his call, I thought Bob was joking when he told me that he had prostate cancer. It came when I was recovering from my surgery and still had the catheter wedged in me.

  “You’re bullshitting me,” I said. “You can’t even let me beat you with prostate cancer.”

  “God’s honest,” he said. “And guess what? I’m not a candidate for a prostatectomy. The cancer has escaped the prostate wall.” Bob let loose a rueful laugh. “With all the other stuff that’s happened to me, somebody up there must hate me.” Here is Bob’s story.

  “I was shocked when I got the news about prostate cancer. I had my PSAs done religiously. In fact, my doctor used to joke that the only thing healthy about me was my prostate. The readings had always been around 2.5 or 2.6, and suddenly it went to 4.2. That’s when I had the biopsy and got the result.

  “The only option I was given was regular radiation or proton beam radiation. That turned out to be no option at all since my insurance denied the proton on the basis that it hasn’t been proven any more effective.”

  Bob’s radiation regimen at Penn wasn’t easy. I know because I did it with him one morning. He was on the road by 5:15 a.m. five days a week for a 100-mile round trip to Philadelphia. He got his therapy (which was generally performed efficiently), hit the southbound lanes of the Atlantic City Expressway, and was at his desk job (he worked in medical records) by 8:30 a.m. “I never missed one minute of work during those seven weeks,” he says. “But I was extremely fatigued. I guess that’s not surprising with the combination of getting up early, two hours on the road, the radiation, and the job. And since the radiation ended, I still feel fatigued a lot of the time.”

  But Bob doesn’t necessarily blame the cancer treatment for his fatigue and downticks in libido and sexual performance. He has been on a buffet of other medications, including tamsulosin, the generic form of Flomax, that has brought relative normalcy to his urination. Once a person starts taking a cornucopia of medications, even the most skilled physician has trouble determining what is causing what. But he is definitely not, well, enchanted with the results of his radiation.

  “I have had nothing but problems from the radiation,” says Bob. “The side effects are getting worse. Two weeks ago I was hemorrhaging so badly my boss sent me home and to my gastro doc where he set up a colonoscopy for me two days later. I had to wear feminine pads to work and everywhere I went prior to that. We were thinking colon cancer.
The colonoscopy showed severe radiation burning and damage to the blood vessels. He cauterized as many as he could and said I might have to return for another colonoscopy if the bleeding continues. It’s been a week and the bleeding is minor.”

  All things considered, though, Bob is not complaining. (I can’t tell you how many times I heard that from members of the Prostate Cancer Club.)

  “Since March of 2010, I’ve survived a stroke to the left side of my body, had surgery to repair two holes in my heart, suffered a heart attack, and won a battle with cancer,” he says. “Yes, life is great! But we’re both classified as cancer survivors, right? And that’s all we could’ve hoped for.”

  TAKEAWAY: The curveballer certainly got thrown a curveball by prostate cancer. Bob had stayed on top of his PSAs and his DREs, yet when cancer was found it was already outside of his prostate. So to the idea that prostate cancer grows slowly we can also add: but not always.

  Remember? There are no rules.

  Plus, I can almost hear PSA advocate Dr. Catalona suggesting that a biopsy could’ve been done when Bob’s PSA hit 2.6. Perhaps that would’ve made a difference. Perhaps not.

  The refusal of Bob’s insurance plan to cover proton beam radiation therapy is common. The issue of the relative effectiveness of proton beam versus intensity-modulated radiation is analogous to that of robotic prostatectomy versus the traditional open method: A brave-new-world treatment comes along. It’s better in some respects than the traditional way, but it’s also more expensive. At the same time, improvements keep being made to the “old” way, partly because the “new” way is such a worthy competitor. So . . . is the new treatment better in the long run?

  A study that tracked nearly 28,000 prostate cancer patients determined, according to its lead author, James Yu, MD, a radiation oncologist at Yale, that as far as side effects go, “in the long term, there’s really no difference in outcomes between proton radiation and IMRT for men with prostate cancer.” At this writing, that seems to be the most complete study available. But it’s not necessarily the last word.