John Shoemaker's prostate cancer diagnosis in 2006 launched the self-described "data-driven" former tech executive on a months-long research project. By the time the 62-year-old landed in Dr. Peter Carroll's office, he knew a great deal about prostate cancer and the nation's top experts who treat it. Still, he was startled to hear Carroll's advice: Track your cancer closely, but don't treat it until necessary. Almost 17 years later, Shoemaker remains on active surveillance and his disease has not progressed. "The strongest, most positive thing I can say is it hasn't affected me at all," he says. "I have lived exactly the same life I would've lived if I hadn't been diagnosed."
In Treating Prostate Cancer, Sometimes Less Is More
Tell us about your diagnosis and your response to it.
I was diagnosed with early-stage prostate cancer in 2006. Fortunately, the urologist who diagnosed me explained that with early-stage prostate cancer, there is no urgency in making a treatment decision. So being the analytical, data-driven guy that I am, I reacted by taking three to six months and doing a lot of research, to learn as much as I could about the disease and the treatments that are available.
I researched every top medical center, one of the best of which was UCSF Medical Center. I set up appointments with six specialists, the last one being Peter Carroll.
Why was UCSF on your list?
The more I learned about UCSF, the more impressed I became. It is literally one of the leading institutions of its type in the world, with some of the best and brightest medical scientists. So to me, it was just logical that this is the place you would want to be if you were a patient.
Why did you pick Dr. Carroll in particular?
I researched each of the specialists I had a consult appointment with and found a lot of data on their performance. Peter's numbers were outstanding.
Number one, he had done these procedures thousands of times; you always want someone who has done it thousands of times. Whereas a typical surgeon would have 30, 40 or 50 percent of patients experience side effects such as sexual dysfunction or incontinence, in Peter's case, the numbers were more like 5 percent. Also, the recovery rate, the bleeding – with all the signs you would use to judge the quality of the surgeon, Peter's numbers were far, far better than average.
When I mentioned his name to other urologists, everyone said he was considered the best.
What happened at that visit?
I went through all my material and asked him what he thought: Should I do surgery? Should I do radiation? What would be best? I was a young and healthy person.
His response was amazing and very encouraging to me. He said, "I have another alternative. Do neither." I said, "You mean watchful waiting?" He said, "No. The problem with watchful waiting is there is too much waiting and not enough watching."
Then he went on to explain active surveillance to me. It's a proactive program that very carefully assesses and measures, in a quantitative way, where your disease is, whether or not it's progressing. If and when it does progress, then you can make a decision about a more intrusive type of treatment.
Another very important fact he gave me was, if a man on active surveillance requires treatment two, three, five years down the road, the success rate and result of the treatment are equal to or better than for men who chose to have the treatment immediately.
Were you surprised to hear that from someone you'd chosen as an eminent surgeon?
It was amazing to me that a world-class surgeon would tell me I shouldn't have surgery. That really put Peter in a unique class for me. He is a very logical, objective person who truly puts his patients first.
Separate from the fact that he's a world-class medical scientist, physician and surgeon, what struck me about him when he first walked in the room was that he's a very unassuming, caring human being. That initial impression has stood up over the years I've known him.
Was it difficult to choose no treatment?
It's important for any newly diagnosed patient to think of active surveillance as an active way of being treated. I think of myself as being treated, as having a very current, constant knowledge of the state of my disease, while at the same time not having the risks that go with invasive treatment. A patient on active surveillance should feel just as secure as a patient having surgery or some more intrusive type of approach.
I feel very confident that world-class experts at UCSF Medical Center are constantly monitoring the state of my disease, and should any change occur, they will be there in a very timely way and we'll make the right decision about what to do. Until then, I'm very comfortable in my daily life.
And I think that that level of confidence in your caregivers is hugely important when you're in something like active surveillance, where the quality of your doctors' thinking and their attentiveness are so critical. That's an underpinning for my whole attitude toward it: the consistency of care, the follow-up.
What does active surveillance look like for you? Has your UCSF care changed over time?
I have been on basically the same active surveillance routines now for almost 17 years. For many years, it was a prostate-specific antigen (PSA) blood test every three months, an ultrasound every six months, and then a biopsy every 18 to 24 months. More recently, because I've been fortunate not to have really any progression of the cancer, we've backed off, and I'm having PSAs every six months, ultrasounds once a year, and office visits once a year. I haven't needed a biopsy for quite a long time, and recently, about two or three months ago, I had an MRI that showed no progression. Everything looks great.
The fundamental routine hasn't changed, but the technology has definitely improved. For example, when I had an MRI a few years ago, it was a bit more invasive than it is now. Digital tools have also made things easier. I live in Los Altos, which can be a long drive up to UCSF with bad traffic. For a recent MRI, we scheduled a video visit to review the results. And we were able to be focused and have a thorough conversation, instead of it taking me three hours to do a round trip and probably have less time. I thought that was fantastic.
Another great thing for me is the new [Mission Bay] campus. It's fantastic and so much easier to get to from the Peninsula.
What's your daily life like on active surveillance?
The strongest, most positive thing I can say is it hasn't affected me at all. I have lived exactly the same life I would've lived if I hadn't been diagnosed. Essentially, I maintain my normal quality of life, other than periodically having a few tests. Life has been very good for me.
I think that's the big thing: I've gone on with my life. Not long ago, I had a thorough exam with my cardiologist, and he told me, "You're going to live another 20 years. There's nothing wrong with you." And I was sitting there thinking about that, and I was reflecting on prostate cancer. I thought, I'm sitting here now older than I've ever been. And in some weird ways, I feel healthier. I'm 79 now and totally healthy in every other way. I've had 16 years already of high-quality, unaffected life, which could have very easily been significantly different.
I hope my experience can be a model for other patients: You can begin active surveillance and potentially go through the majority of the remainder of your life without ever having to do anything. I've had a very positive longitudinal result. I don't worry. I don't think about it. I do the tests as required. Between knowing and tracking my own numbers, having confidence in my care team, I really haven't worried about it much.
How would you describe your experience at UCSF?
It has been outstanding. Every staff member I've interacted with has been not just extremely competent, but also friendly and personable. I could not recommend an institution more highly.
UCSF reminds me a lot of Silicon Valley, culturally. It's open and collaborative. That's the kind of environment that allows scientific advances to be made and creative new concepts to form, be nourished and grow. Active surveillance is an example of that.
My wife, Donna, and I both feel that UCSF encouraged us to be active participants in our own health care. You're not just doctor and patient. You're a medical team. We're part of the team.
When we walked into Peter's office in 2006, what was looking like a potentially horrible illness experience became a positive new dimension of our lives. We look upon Peter as a personal friend now. And we've become very involved in advocacy and patient education work related to prostate cancer and active surveillance. Donna and I have a motto: Make the problem the answer. This experience has been a great example of that.