In the summer of 2005, Steve Henley was a successful 64-year-old financial services executive with a steady girlfriend. He was in great shape, often rowing for miles on the river. Receiving a diagnosis of prostate cancer came as a shock. [Editor’s note: To protect his privacy, the patient’s name has been changed. All medical details are as reported.]
But Henley took his time before making a treatment decision. Diagnosed in September, he did not reach a decision until nearly five months later — and that was after shuttling between two major cities and consulting with a total of seven doctors and multiple friends. Two surgeons recommended open prostatectomy (done with an abdominal incision), two radiation oncologists recommended implantation of radioactive seeds, two medical oncologists advocated watchful waiting, and one surgeon suggested robotic-assisted laparoscopy — the option Henley ultimately chose.
Could you describe the circumstances leading up to your diagnosis of prostate cancer?
In July, I went in for my annual physical. I’d been rowing on the river for 15 miles and was pretty dehydrated. It was shortly after I finished my row that I went for my checkup. My internist did a digital rectal exam (DRE), and then I had a PSA.
The previous year, my PSA had been 3.5. But this time it came back at 6.0. The percentage jump alarmed my internist. So he suggested that rather than wait a couple of months to do another PSA test, that we do a follow-up test in two weeks. The second test came back at 4.4.
My internist sent all the information to the urology department. They thought the jump was significant and suggested that I have a biopsy.
About a month prior to the biopsy, I met with a nurse to go over the procedure. She told me, first of all, that I shouldn’t have had a DRE before the PSA, and that second, all of that physical activity and dehydration would have affected my results. I also mentioned that I’d had sex in the two days before the PSA, and she said that before a PSA, you should abstain from sex for a couple of days, and that any one of those three things could have made the PSA jump the way it did. But regardless of that, they still felt I should have the biopsy.
So I had the biopsy in September. Of the 12 samples, 2 contained tissue that was 20% cancer.
At that point, I started seeing doctors for consultations. I had another PSA about a month later, during one of the consults, and that came back at 3.6. So the irony is, if I had somehow missed the earlier PSA tests, and just scheduled one in October, I never would have been diagnosed with cancer.
And no one felt anything during a physical examination?
No, and during all these follow-up visits, I certainly saw a lot of doctors. And they never felt any nodule or hardening during the DRE.
Do you remember what you were told about the Gleason score, or other characteristics of the cancer after the biopsy?
The Gleason was 3+3. Everyone that I talked with told me I had early-stage cancer and I had plenty of time to thoroughly investigate what I wanted to do.
Can you share with us some of your emotions and thoughts when you got the diagnosis?
They called me in and told me they’d discovered cancer. And I had a first meeting with one of the urologists, who explained all of the different ways to deal with the cancer. You know, I’m a Vietnam vet. I was a Marine helicopter pilot. And when I came back from Vietnam, I realized I’d developed an attitude where I don’t worry about things. And that pervaded my reaction to cancer. I knew that I had to do my homework and decide what I wanted to do for myself, but it isn’t something that put me into a tailspin.
Who did you talk to, as you made your decision?
I talked with a lot of people, in and out of the medical profession. I talked with surgeons who were leaders, as far as I could tell, in open surgery [prostatectomy], the leading seed-implant radiation oncologists, and then medical oncologists. But I also talked with men, like former fraternity brothers at college, who I knew had prostate cancer, and started picking their brains. I also went online. The state where I live maintains a Web site listing doctors and the number of operations they’ve performed, and so I was able to determine who had done the most surgeries.
And you know, if you look at that list, it can scare the hell out of you. It made me realize that there are people who’ve had prostate surgery performed by a surgeon who does maybe one, two, or three of those operations a year. And you wonder, how could anybody make that decision? I know I wouldn’t want someone who’s done only one operation in a year to do me!
What did the doctors advise?
I first met with two doctors who did open surgery. Because my cancer was early stage, I never had the concern that maybe it was going to spread.
A bigger concern, to me, was retaining my potency. And neither one of the surgeons was able to give me any reassurance that they could preserve one of the neurovascular bundles, which would allow me to remain potent [see “Neurovascular bundles,” below]. Both of them said, “Your cancer’s in the apex,” and they showed me how the nerve bundles came down right next to the apex.
So they weren’t going to know until they got in there if they were going to be able to save the nerves. They were fairly confident they could save the other side. So that would give me at least a 33% chance that I could retain my potency.
These two portions of the prostate gland contain the nerves and blood vessels necessary for the maintenance of erectile functioning and potency.
So the surgeons weren’t sure that they could save the neurovascular bundle, at least on one side.
Right, and if they couldn’t save the neurovascular bundle on the one side, there would be only a 33% chance that I’d be able to have an erection after the operation. So I decided to seek some other opinions and look at other treatment options.
I met with two different radiation oncologists and two medical oncologists. And both of the medical oncologists thought I should consider active surveillance. For a while, I gave that serious thought. And I guess the bottom line was, I just wanted to have it taken care of. I didn’t want something hanging over me as time went on.
Why were the oncologists recommending active surveillance? You’ve mentioned that the second oncologist you saw really made a strong argument for it.
That’s right. First of all, he was concerned about what my quality of life would be like after surgery. I had shared with him my concern about retaining my potency.
What kind of statistics did he provide?
He said that some of the statistics out there are really bogus, that some of the doctors are not asking the hard questions. He cited the example of one well-known doctor, who asks his patients after surgery whether they were pleased with the surgery. And of course, if you think you don’t have cancer anymore, you’re going to say, “Sure, I’m pleased with my surgery.” But this doctor wouldn’t ask specific questions, like “Are you pleased with your potency?” or “Do you have any incontinence?” and so on. The doctor I was seeing had some problems with that, because he’d gone back to the same patients, and asked those questions, and came up with pretty grim results. So my doctor thought the chances of recovery after open surgery were a lot less optimistic than some of the statistics might suggest. [Note: Studies that use questionnaires to ask patients about specific problems tend to find a higher incidence of particular side effects than other sampling methods. See, for example, “The Prostate Cancer Outcomes Study,” below.]
The Prostate Cancer Outcomes Study
This study involved 1,291 men ages 39–79 who filled out questionnaires asking about specific changes in urinary and sexual functioning following radical prostatectomy. When questioned 18 months or longer after treatment, 8.4% of men reported being incontinent, and 59.9% reported being impotent. These percentages indicate incontinence and impotence may be more common than other studies, which relied on patients volunteering specific information, have found.
Source: Stanford JL, Feng Z, Hamilton AS, et al. Urinary and Sexual Function after Radical Prostatectomy for Clinically Localized Prostate Cancer: The Prostate Cancer Outcomes Study. Journal of the American Medical Association 2000;283:354-60. PMID: 10647798.
And what did the radiation oncologists advise?
I was really impressed with both men. They talked about the implantation of radioactive seeds [brachytherapy]. I said to one of them, “You know, I’m getting all this information and I’m in overload here. So if you were in my position, what would you do?”
And he said, “Well, I’m 20 years younger than you. So if I had prostate cancer, I would have surgery. Because I’m most concerned about living a long life.”
And I said to myself, “Look, pal, I want to live a long life too!”
Did he provide evidence that surgery would make an individual patient live longer?
No, he didn’t. The issue is that they don’t have enough statistics on the seed implants to know whether they are knocking cancer totally out of the system. But what persuaded me was that here was this seed doctor saying, “If it were me, I’d have surgery.” That immediately eliminated seeds for me.
Did either of the radiation oncologists mention external beam radiation?
Both of them said that was something that could be used, but they focused on their own area of expertise, which was brachytherapy.
So then what happened?
Well by this point it was December, and I was less than happy with the information I was getting. I knew I wasn’t going to have brachytherapy. So I made an appointment for surgery in March. Because even though doctors were telling me I had a long time to think about all the options, I was really feeling like it was time to make a decision, because I’d been looking at options for three months.
In the meantime, two of my fraternity brothers were diagnosed with prostate cancer. One had open surgery in another city. I talked with him and his wife by phone, on speakerphone so that I could talk to both of them. And they were very candid with me about their life and his recovery from cancer surgery. He’d had surgery in mid-July, and I talked with them in early October. He told me that by then his incontinence was under control, but even though he was taking Viagra on a daily basis, he still wasn’t getting any sign of an erection. And it had been three months.
Have you talked with him since then? Has there been any improvement?
I did talk to him right before I had surgery. By then it had been eight months, and he still wasn’t able to have an erection.
My other fraternity brother found out that he had prostate cancer a week after I did. And we were sort of holding hands and exchanging notes while we tried to make a decision. He’d read a book by a well-known surgeon, and decided to make an appointment with him to discuss open surgery. But this book also mentioned another doctor, in the same hospital, who did laparoscopic surgery. The meeting with the first surgeon went well. But as my fraternity brother and his wife were leaving the hospital, he said, “I’m just going to call this guy who does laparoscopy and ask if he can see me.” Fortunately the second doctor was there and actually had time to see him.
Eventually, my friend decided to have laparoscopic surgery. He had the surgery in January. His recovery time was really quick. So he urged me to consider it. And I did.
But my girlfriend had been after me ever since I was diagnosed to look at robotic surgery because her investment advisor had recommended that she invest some money in the company that makes one of the robotic devices. At first I said, “Yeah, okay.” But I didn’t take it seriously.
One of her friends knew that I had cancer and called her up to say, “Did you or Steve see the article on robotic surgery?” The article had just run in a magazine. We hadn’t seen it, so we looked it up, and the article included an interview with a patient who had undergone robotic surgery. He talked about how easy it was, and how quickly he recovered, and was able to do all of the activities he wanted to do.
The article mentioned two doctors in another city. So I thought, “As part of my investigative research, I’ve got to go talk with both of these guys.” So I made an appointment to see them in February. My girlfriend went with me. But I was so impressed with the first surgeon that I canceled the meeting with the second.
What impressed you?
Well, first of all, his background. He was originally trained as a surgeon who did open prostatectomies. But then he became intrigued with laparoscopic surgery, so he went to France to learn the technique, and then started using it in his own practice. When robotic laparoscopic surgery came out, he also took the time to learn it [see Figure 1]. So I saw someone who was on the cutting edge, who had taken the time to ensure he could be the best surgeon he could be. It just gave me a lot of confidence.
One of the questions I asked him about the surgery was, “I’ll accept that you’re confident about running the robot. But what if the robot breaks down halfway through the surgery?”
He said, “I’ll open you up and finish.”
Figure 1. Operating by remote control
To perform a robotic-assisted laparoscopic prostatectomy, the surgeon sits at a console several feet away from the operating table and manipulates robotic arms, which are fitted with tiny cameras and surgical instruments, to locate and remove the diseased prostate gland. The console contains two full-color computer screens that provide a magnified, three-dimensional view of the prostate and surrounding tissues. The surgeon guides the robotic arms by manipulating manual controls while watching the screens.
Proponents of this approach claim that robotic-assisted laparoscopic prostatectomy offers greater magnification and surgical precision than the alternatives, but thus far the evidence indicates that success rates and chances of complications are about the same as for traditional laparoscopic prostatectomy and radical prostatectomy (so-called “open” surgery).
That’s an important consideration, because many people who are trained to do laparoscopic surgery haven’t been trained to do open surgery. Yet sometimes they have to switch gears in the middle of the operation and perform an open prostatectomy [see Figure 2].
That’s exactly what he said. But even more important, in my mind, was his answer to another question. I said to him, “You’ve been trained in all three disciplines, so why do you think robotic surgery is the best choice for me?”
And he said, “The clarity of vision, the magnification, offered by robotic surgery is about 12 times greater than using your eyesight during open surgery. So when I’m putting a stitch in, it’s so clear, it improves the precision.”
He even said that with this technique, he can see the color differentiation, where the cancer begins and ends. And he said you just can’t do that during open surgery. The other thing he mentioned is that there’s virtually no blood loss. And the recovery time is significantly better.
Figure 2. Practice makes perfect
The likelihood that a surgeon performing laparoscopic prostatectomy will have to switch to open abdominal surgery in order to complete the operation goes down significantly with practice, measured in the number of operations performed.
Source: Journal of Urology, July 2005.
Did he mention anything about the visualization of the neurovascular bundles?
Yes, he felt pretty confident that with the increased magnification, he would be able to move them aside, and remove the prostate with no problem. He said, “If the cancer has spread into the seminal vesicles, then obviously we have to deal with that. And we won’t know until the operation.” But he seemed pretty confident that after the operation I’d be in good shape.
Did you consider having robotic surgery closer to home?
You know, I did look into it. But I did some research, and it looked like there weren’t many people doing this at the time in the city where I live, and they didn’t have a lot of experience. One surgeon had done 50 of these operations. The doctor I met with had done about 400. So I’m thinking, “Okay, 50 versus 400. I think I’ll go with the guy who’s done 400.”
What kind of logistics were necessary, with you being in one city and the operation being done in another?
There were some logistical challenges. I ended up doing the preoperative testing at a hospital near my home, and then had it sent to the surgeon in the other city. He was willing to accept their medical tests.
During the operation, they inserted a catheter, which is normal. And he was also comfortable with me having the catheter removed near my home, but the hospital up here didn’t want to get involved, because it wasn’t their operation. So I ended up traveling to the other city to have the catheter removed.
How long did you have it in place?
And tell us a little more about the operation, and how you felt afterward.
My girlfriend and I stayed in the hospital the night before. They actually have some rooms you can rent. I thought I was being operated on at 10 a.m., and I had to be in the prep room at 8 a.m. But there was a miscommunication, and I didn’t get into the operating room until the afternoon. So I spent all day in the waiting room, which was annoying. But they operated on me at 4:30 p.m. They were finished by 6 p.m. I spent the night in the hospital, and at 10:30 the next morning, I walked out of the hospital.
How did you feel?
I felt great. We took a cab to the train station. We took the train home. We then caught a cab to my condo. I walked up four flights of stairs as briskly as I’d ever walked up the stairs. And I felt terrific.
Any postoperative complications?
And what did the final pathology show?
They felt they had a clean margin, that they got all the cancer out.
Did they sample the lymph nodes?
They did, and the lymph nodes were clean. No cancer.
So if you had to offer advice to people who may be trying to weigh all the options, what would you tell them?
I think it’s important that you reach a decision that you’re comfortable with, and it took me a long time to get to that point where I was comfortable. By the time I got into the operation, I’d reached the point where I thought, “Okay, whatever happens, happens.” I believe I made the right choice for me. And I can live with whatever happens. And I think everybody needs to get to that point.
Of course, I had the luxury of time. I didn’t have the pressure of an aggressive cancer. So I felt confident that my cancer would be cured. My larger concern was my potency.
How has your recovery gone?
My potency returned a month after the operation. The incontinence has been a problem. I talked with my doctor a few weeks ago, and he suggested a biofeedback session at a hospital near my home. He said that I may not be doing the Kegel exercises correctly. But he said, “I promise you that your incontinence will be resolved. You’ve just got to be a little patient.” [Note: A Kegel exercise is an exercise for the pelvic floor muscles that is used to prevent and treat incontinence.]
What was the biofeedback session like?
I’ve only had one. And I have another session in a couple of weeks. Basically they put a sensor on my stomach, and one in my anus. And they hook the sensors up to a computer. I then did a Kegel exercise. And the graph showed that I wasn’t using my abdominal muscles, so I was doing the exercises correctly. But my sphincter muscle isn’t strong enough to hold the contractions. So the nurse gave me a set of exercises about how to do the Kegels better.
Has the incontinence been getting better?
For several months now, I don’t need a pad anymore to get through the night. You know, it’s interesting because I row, and I don’t have a problem. If I’m sitting at my desk, I don’t have a problem. My biggest problem is if I’m lying on a couch, watching television. And recently I went to an outdoor production of one of Shakespeare’s plays, held in a public park. I was sitting on a blanket. And I was a mess. So it has something to do with the position I’m in.
I know you’re happy with your potency. Did you do anything in particular to speed your recovery?
The surgeon had advised me that the more sexual activity that someone has had leading up to surgery, the better their chances of recovery on the other side. If someone is sexually inactive, that makes it more difficult. I’d heard that from other doctors as well.
Yes, that’s true. We tell that to patients all the time.
[Laughing] So before the operation, I probably focused more on having sexual activity than doing my Kegel exercises.
Have you had a postoperative PSA?
I did. It was less than 0.1. And the digital exam showed nothing.
So knowing what you do now, would you still make the same treatment choice?
Without question. I’m glad this is behind me.
Any parting thoughts?
There’s a lot of information out there. And it’s easy to get overloaded. The more information I got, the less comfortable I felt with my decision — until I found robotic surgery.
It’s not an easy decision for anyone to make. But, I think, the more people you talk with and the more familiar you can get with the issues, the easier it is to make a decision that’s right for you. It’s a mistake to decide on one course of action without knowing what the alternatives are.
Originally published January 2007; Last reviewed April 20, 2011