“Your article in the paper that indicated you have chosen surgery rather than active surveillance made me think about getting another opinion and possibly following your lead to Hopkins. But the bottom line is that I have decided not to get any more opinions outside of my internist and my urologist. My PSA tests have been about the same number for the past 18 months and my next biopsy is due in May 2013. I will continue to see my urologist for my six-month follow-ups, have my PSA checked every six months, and have a biopsy every two years, or sooner, if it’s indicated.
“Although I chose active surveillance, I think all men over a certain age should allow themselves the time to be checked for prostate cancer so they will have treatment choices before it is too late to have these choices.”
TAKEAWAY: Bob made a carefully considered decision and seems comfortable with it. He did his research and explored his options. He thought about what he was doing. And if he gets a higher PSA reading in the future, he can change his decision. The link to the Sloan-Kettering Web page he mentioned is in Sources and Resources (this page).
Jim Mikitka
AGE AT DIAGNOSIS: 48
PSA LEVEL: 2.4
GLEASON SCORE AND BIOPSY REPORT: Unknown; minor core involvement and localized
DECISION: Robotic prostatectomy
OUTCOME: Good
Jim was one of the most enthusiastic responders to my prostate columns. He had done extensive research on robotic surgery and was gung ho about how well it had worked for him. But he also said this: “Everyone’s body is different, and none of the research out there is exact. You have to make the best decision for yourself and not look back.” Here is Jim’s story.
“I had been followed for prostate cancer starting at age 40 because my father and his five brothers were all diagnosed with the disease at some point in their life. My dad didn’t believe in going to doctors, and when he was diagnosed at 70, the prostate cancer had spread outside of his gland and into his bones. They treated him for six years with chemo and hormone treatments, but were finally unable to control his disease. The last seven years of his life were not of high quality and were a difficult time for all of us.
“I’ll never forget what his oncologist told my brother and I when my father was diagnosed in the hospital: ‘The best way to control cancer is to diagnose it as early as possible and remove it from your body.’ That’s when she told my brother and I to start screening at 40.
“At age 48, my PSA came back at 2.4, still well below what they consider normal, but the trend over time had shown an increase from the previous year. They repeated the test with the same result, and, although the urologist didn’t feel anything in the digital rectal exam, he recommended a biopsy. The results came back positive and confined to one area of the prostate. He was confident it had been caught early and was still contained, and he recommended the traditional open method of surgery to remove it.
“My wife and I did a ton of research and I ended up with two other opinions from doctors trained in robotic surgery. They both agreed I should get it out. I had surgery on December 3, 2008, and walked out of the hospital the next day feeling fine.
“My PSA tests since have all come back negative. I’ve had little to no incontinence since the surgery, and amazingly, the sexual function has also returned.”
TAKEAWAY: Jim’s story is notable for a couple reasons, the first being the heredity angle. A 2002 review study published in the Journal of Urology provides a detailed look at that connection. There are lots of parsings in the study, but here’s an example: A man with one brother who was diagnosed with prostate cancer before the age of 60 is three times more likely to develop prostate cancer than a man with no family history of it. And Jim had extensive prostate cancer in his genes.
The second interesting part of Jim’s account is his low PSA reading. Remember that low PSAs sometimes disguise cancer just as high PSAs frequently indicate BPH and not cancer.
Also, there’s a high probability that the full return of Jim’s sexual function had a lot to do with his relatively young age when he was treated. As Dr. Patrick Walsh explains in his Guide to Surviving Prostate Cancer, men lose nerves as they age. (Not “nerve”—“nerves.”) Dr. Walsh says that by age 60 the average male has throughout his body only about 60 percent of the nerves he was born with. Combine that with nerve loss from surgery and the difficulty with erection becomes clearer. At 48, Jim had a better chance than, say, a 60-year-old of getting an erection, and a much, much better chance than a 70-year-old, up to 75 percent of whom are impotent after surgery.
That is another reason that the decision for intervention is a befuddling matter for younger men: Risking loss of potency is a more serious matter, but there’s also a better chance that post-intervention potency will return.
Kevin Snyder
AGE AT DIAGNOSIS: 58
PSA LEVEL: Between 5 and 6
GLEASON SCORE AND BIOPSY REPORT: 3 + 3; involvement in five cores
DECISION: Robotic prostatectomy
OUTCOME: Pretty good
Kevin was one of the men who stayed in touch after reading my columns in the Morning Call. Here is his story.
“My maternal grandfather was diagnosed with prostate cancer in his mid-to late 70s. He had radiation treatment and died 10 years later from causes unrelated to prostate cancer. I have an uncle who had radiation treatment for prostate cancer when he was in his 60s and is still alive today at 88. So prostate cancer is in my family.
“Like you, I was seriously considering active surveillance, but my urologist was dead set against it. He told me at my age (58), I should consider having the surgery.
“So I scheduled a meeting with one of two surgeons who would be doing the surgery. I figured the surgeon was going to echo my urologist’s recommendation, but he threw me a curveball and started to give me all of the treatment options, including active surveillance. So now I was a little more confused and had to make some more decisions. But I decided I would have the robotic and so far everything seems to be progressing as well as can be expected.
“My Gleason was only 3 + 3, so I thought I was a low-risk patient. But after the surgery, my doctor informed me that nearly 20 percent of my prostate was cancerous and that I was up against the margin. I’m very happy I did not choose active surveillance.
“I still have leakage and continue to wear a pad, but only one a day to be safe, and it’s never saturated. The doctor has me doing the Kegel exercises again. Surgery may stop the incontinence, but the procedure might make it more difficult to empty one’s bladder, so there is no perfect solution. I’m getting used to wearing the pads and am no longer embarrassed to buy them. It is what it is.
“All in all, I am happy with my decision. In fact, I am now on a billboard promoting men’s health and prostate-related issues that’s sponsored by Urology Specialists of the Lehigh Valley. Think of me when you pass the billboard, and I’ll think of you.”
TAKEAWAY: What I found most interesting about Kevin’s story was the dueling opinions—get the surgery; no, consider active surveillance—he got in the same urology office. I have heard that from other men. As we all know by now, there are differing opinions about treatment and doctors do not speak with one voice. But it’s extremely discomfiting for a patient to have one doctor be so positive about one thing and then have his colleague come along and muddy the water. Yes, the waters are often muddy from the get-go, but urologists from the same office should at least have a unified message, even if that message is that there are options.
Even though post-prostatectomy patients tend to struggle more with ED than incontinence, Kevin’s battle with his urinary function is hardly rare. There are remedies both surgical and prescriptive, but you know how remedies are—they often bring with them their own set of problems.
Bill Moss
AGE AT DIAGNOSIS: 70
PSA LEVEL: 4.8
GLEASON SCORE AND BIOPSY REPORT: 3 + 4; involvement in five cores
DECISION: Robotic prostat
ectomy
OUTCOME: Life altering
Among the e-mails I received after my second column appeared was one from Anne Moss. She was writing about a robotic procedure that her husband, Bill, a retired engineer, had undergone. She mentioned a regional hospital and a specific surgeon and wrote, “PLEASE PLEASE reconsider your decision to have robotic surgery if it is going to be with this man at this hospital. He is a butcher. My husband had a bad, life-altering experience after robotic surgery.”
I exchanged e-mails with Anne, who had worked in hospitals as a technician, and subsequently met with her and Bill on two occasions. Here is Bill’s story.
“I was offered all of the options, including radiation and active surveillance,” says Bill. “But I was also told I was an excellent candidate for surgery since I was in good shape, so I decided to go that route. Some of the guys I play golf with told me, ‘Robotic is nothing. It’s a no-brainer. You’ll come through it fine.’
“After the procedure, I woke up in excruciating pain. I’ll never forget that the patient in the bed next to me had had the same surgery the day before, with a different surgeon, and he was getting dressed to leave. I was in the hospital for seven days, in pain all the while.”
Anne picks up the story.
“While Bill was lying there in agony I noticed that his Foley catheter was not filling with urine even though he was getting lots of IV fluid. I alerted the nurse and I could tell she was concerned. His JP drain, though, was full. [Note: The Jackson Pratt drain is used for collecting fluids draining from surgical sites. It is not specific to prostate cancer. My surgeon, Dr. Lee, does not use it. He says that it might be used by inexperienced or less confident surgeons or for more serious procedures.]
“Our surgeon came in and he could tell something wasn’t right. But you know what he said? ‘You signed a release.’ That floored us.”
Even after leaving the hospital, Bill had pain that “sent me to my knees.” Anne took him to the emergency room on one occasion because the pain was so intense they thought he might be having a heart attack.
“I had the catheter in for six weeks, but even during that time urine was running out,” says Bill. “I kept a towel wrapped around my leg all the time. And whenever we saw the surgeon, his response was always, ‘This is normal.’ ”
The catheter came out after six weeks, but the JP drain remained. As did the uncontrollable flow of urine. “It was like he was a baby again,” says Anne. “It was very, very difficult.” And Bill had been a faithful Kegeler; he had tested off the charts for pelvic muscularity.
The Mosses tried to live a normal life, but it was impossible. “I peed my way through the Philadelphia Flower Show,” remembers Bill, and on the way home, he turned to his wife and said, “If I have to live like this, I don’t want to live.” Anne cried. “That really, really scared me,” she says.
They eventually saw a urologist in Philadelphia, who gave Bill an artificial sphincter that is fitted between his anus and testicles to help him urinate and give him more control. Anne and Bill say they are happy with his current urological care, but still don’t know exactly what went wrong during the robotic procedure.
Bill was in the operating room for 5½ hours. That is at least 2½ hours longer than normal and a full 4 hours longer than I was in with Dr. Lee.
“When I asked the surgeon about it, he said, ‘Oh, I had trouble with the robot,’ ” says Anne. “A da Vinci representative did go into the OR during the procedure. But when we called the company, they said it was ‘privileged information.’
“When I talked to the chief of surgery, he said, ‘Oh, no, the doctor didn’t have a problem with the machine. He just had a problem with an electric cord.’ He also told us that the surgeon had some difficulty because of a previous surgery that Bill had had. But that was on his kidney. That shouldn’t affect a prostate procedure.”
The Mosses pursued legal action, but could never get anywhere. “The urologist we have now knows that the surgeon did something wrong,” says Anne, “but he won’t testify against him.”
The artificial sphincter, though clearly not in the category of earth’s most enjoyable devices, has given Bill decent urinary control. He still wears a small pad and feels squirts when he takes a golf swing, but he says it’s bearable. His sexual function is pretty much gone—continuous urine leakage went a long way toward deadening the nerves, never mind the damage that was done during the procedure. He and Anne used to enjoy bike riding, but they don’t do that anymore because his device makes sitting on a seat very uncomfortable. Both his urologist and his family physician have him on duloxetine (Cymbalta), which is used to treat depression and anxiety disorder.
“I didn’t really think I needed it,” says Bill.
“Well, they knew what you went through,” I suggest, “and they probably thought, ‘Now, there’s a guy who must be depressed.’ ”
Life is better for Bill now. He’s back to playing golf and enjoying his family. “I’ll always be like this,” says Bill. “But, hey, I’m alive.”
TAKEAWAY: The USPSTF would use Bill Moss as a poster boy to point out the dangers of surgical intervention. And some would say that at 70, he was too old for surgery and that radiation might’ve been better. But Bill didn’t do anything radically against the book. Even at his age, he was in good shape for surgery. And someone in his family had developed leukemia after radiation, so he was fearful of that procedure. People make decisions like that every day, and they are completely understandable.
The Mosses thought they had the correct man to do surgery. He was chief of urology at the hospital and talked a good game. But it turned out that he had done very few unassisted robotic procedures. A prospective patient should make sure that his surgeon is a veteran.
Without knowing the specifics of the case, the best guess offered by Dr. Lee was that Bill’s surgeon botched sewing the bladder to the urethra.
I also asked Dr. Lee if the robot routinely fails during surgery. “That has happened to me twice,” he said. “I am pretty confident that I know how to fix it. But we are fortunate that we have two robots, and we wheeled the other one in to complete the procedures.
“The problem is, if the robot goes down and you don’t have another one, time passes. Now you have to complete the procedure by the open method or by using laparoscopic instruments. And not everyone is trained in those methods. That can be very dangerous.”
So if you’re having a robotic procedure and you’re the kind of person who believes in worst-case outcomes, find out if your surgeon is skilled enough to perform the operation using another method. I confess to not having thought about that until I heard Bill’s story. It turns out that Dr. Lee, like many other robotic specialists, was trained in all methods, but I’m glad I didn’t have to find that out.
In Sources and Resources at the end of this book, you will find my e-mail address. You may contact me to find out the identity of Bill’s surgeon. I will also provide you with contact information for the Mosses. They would love to hear from you and could use your support.
Robert Keiber
AGE AT DIAGNOSIS: 51
PSA LEVEL: 5.4
GLEASON SCORE AND BIOPSY REPORT: 3 + 3 and 3 + 4; involvement in two cores
DECISION: Open prostatectomy
OUTCOME: Mixed, but generally pleased
The Keibers were among the first to respond to my columns about prostate cancer, partly because Bob’s wife, Sandy, is an operating room nurse. I found their story interesting because it started to unfold 15 years ago, when the world of prostate cancer awareness was different than it is now. Here is Bob’s story.
“I made Bob go for a physical in 1998,” says Sandy. “He had started getting up a lot to urinate and I noticed changes in intercourse. It was just . . . inconsistent. He was 47 then. It was too young for that to be happening.
“I told the doctor we wanted a PSA and he said, ‘Are you kidding? He’s not 50, so he doesn’t need it.’ But I insisted. It wasn’t tal
ked about much back then. The only reason I knew anything about the prostate was because I was an OR nurse. It was only after his physical that I found out that Bob’s father had died of prostate cancer.”
Bob’s reading came back at 3.5. Four years later, he went back for another physical. The result was 5.4, and the bells went off. The Keibers decided immediately that they would choose intervention.
“The robot was experimental at that time, so that really wasn’t an option,” says Robert. “I met with a surgeon and a radiologist, but I only knew about active surveillance because I read extensively. [Bob is a retired high school history teacher.] I decided on surgery because I had heard that with radiation there was no going back in. I had the operation three weeks after 9/11. The fact that that tragedy went on certainly gave me strength to go through this.”
As is so often the case, Robert’s cancer was nearer the capsule than anticipated. He had his catheter in for three weeks, which was more the norm a decade ago. After his catheter was extracted, he stood up and urinated all over the floor. “I still remember I turned to my wife and said, ‘Oh, my God,’” says Robert. “It was so mortifying.”
Robert had a rough recovery and things still aren’t perfect. He still wears a pad—a sudden cough or laugh will produce a few squirts—and medication-aided intercourse is “not quite the same as it used to be,” says Sandy. It took Robert 2½ years to get to the point where he could have an erection.
But his PSAs have been near zero, he doesn’t have regrets, and the couple’s feelings about the USPSTF recommendation are clear: “I was appalled by it,” says Sandy. “When I consider the family history, the age when he got it, and the PSA number, I think he’d be dead if he hadn’t gotten the test a second time.”
The Keibers were high school sweethearts—“Same class, same friends, just had our 45th class reunion,” says Sandy—and they have leaned on each other throughout the ordeal.
The Prostate Monologues Page 15