Choosing — and sticking with — active surveillance: A patient’s story

In 1997, Jeffrey Caruso’s physician recommended prostate-specific antigen (PSA) screening as part of Caruso’s annual checkup. Then a 57-year-old businessman and avid bicyclist, Caruso* hadn’t had any prostate problems, but he agreed that regular PSA screening was probably wise for someone his age. The result — 3.9 ng/dl — raised some concern because it fell at the upper end of what was considered the normal PSA range: 0 to 4.0 ng/dl.

Caruso and his doctor chalked it up to his daily bike rides. During a long ride, the bicycle seat can put a lot of pressure on the perineum, the area between the anus and the scrotum, which can raise the PSA level even when cancer isn’t present. So neither doctor nor patient worried much about the finding.

The next year, however, Caruso’s PSA had risen to 4.4 ng/dl. Anxiety set in. He soon saw a urologist, who monitored changes in his PSA and performed digital rectal exams. (See “Feeling the prostate,” below.) During one of these exams, the urologist noted that a small part of the prostate seemed slightly firmer than the rest, a possible sign of cancer. In April 1999, Caruso had his first prostate biopsy. It was negative, but the initial surge of relief was quickly tempered.

“The urologist called me with the results and said that he did not find any cancer,” Caruso recalled. “But then I asked him, ‘Does that mean I don’t have cancer?’ And I remember he said, ‘No, it means we just didn’t find any.’ When he said that, I started to worry. Not finding cancer and not having cancer are two different things.”

Annual PSA tests and digital rectal exams followed, and Caruso’s PSA level continued its slow upward climb. In 2005, it hit 5.0 ng/dl, and both Caruso’s urologist and an oncologist felt a more pronounced hardening on the right apex of the prostate (see Figure 1 below). A second prostate biopsy followed, as did the diagnosis that Caruso feared: prostate cancer.

In this interview, Caruso describes his cancer diagnosis and the seemingly endless research he conducted regarding his condition. He also explains his decision to pursue active surveillance, sometimes called watchful waiting, a strategy he has stuck with for more than three years. (Active surveillance involves frequent monitoring of the cancer, rather than actual treatment, to gauge its activity. Because patients can opt for treatment at any time, doctors may use the phrase “active surveillance with delayed intention to treat” instead.) Caruso also offers advice for men recently diagnosed with prostate cancer who are sorting through treatment options.

Aside from the findings, how did your second biopsy vary from the first one?

There were several differences. During my first biopsy, the urologist took 15 cores, or tissue samples. In 2005, he did 20, so there was a greater likelihood that he’d find cancer if it was there. The needle was also smaller, and he gave me local anesthesia, which made a huge difference. If there’s no anesthesia, the biopsy is kind of painful. It’s not excruciating, but it does hurt. With the local anesthesia, it still wasn’t a pleasant experience, but it was more bearable.

How extensive was the cancer?

The pathologist found cancer in 40% of one of the cores from the right apex of the prostate. It was a Gleason 6 cancer, scored at 3 + 3. I asked to have the tissue samples sent to a pathologist at another hospital for a second opinion, which confirmed the original findings.

How did you react to the diagnosis?

I probably had the same reaction anyone else would: panic for several months and the fear that I was going to die in a year or two. When the panic finally went away, I was depressed. It was just like reactions I had read about in a number of books — that feeling of “Why me?” I also remember having a very strong urge to do something immediately. I didn’t want to wait and then have it be too late. My urologist said that I qualified for surgery and that he could perform the procedure, but he said that radiation and active surveillance were also options.

But you didn’t have a radical prostatectomy. Why not?

I was ready to have surgery when I left the urologist’s office, but he wanted me to see other specialists and consider other options. I went to see a radiation oncologist. Although he said I could have surgery or another form of treatment, he specifically recommended that I have seed implants, or brachytherapy. After that, I was ready to have seeds put in. I guess when you’re panicked and you want to do something immediately, you tend to go with the most recent recommendation you’ve gotten from a knowledgeable and articulate professional who really believes that it’s a good option for you.

But between these appointments, I saw an oncologist who also described all the options but stressed active surveillance. He also emphasized the fact that I didn’t have to rush to make a decision. Some studies had shown that people like me with early-stage prostate cancer and no symptoms could wait a year or so to make a decision. [See “No rush,” below.] Knowing that, I calmed down and decided to study the whole situation. How could I beat this cancer? I started to study the natural history of the disease and the available treatments, and I became increasingly aware of the side effects that accompany any and all of the treatments.

Which side effects particularly concerned you?

I was concerned about all of the side effects. I had started talking to several patients and personal friends who had dealt with prostate cancer. Some of them had been operated on, others had radiation. One of the patients I talked to suffered from both urinary and fecal incontinence for several years. He ended up having two operations to minimize these problems, but he confided in me that he was ready to “call it quits” after two years of both fecal and urinary incontinence.

So he initially opted for a radical prostatectomy?

No. It’s hard to believe, but he actually had seeds. He became convinced that the seeds were misplaced or moved, because the degree of the side effects was so great and fecal incontinence is uncommon with this treatment. He finally had corrective surgery done. [See “Common side effects,” below.]

For me, the worst side effect of treatment would be fecal incontinence; second would be long-term urinary incontinence, and third would be erectile dysfunction. There is a very high potential for erectile dysfunction, especially in an older man. (Somebody might say that I’m an older man, but I certainly don’t feel like one!)

There are lots of data on the side effects of prostate cancer treatment. Even the very best practitioners, both radiation oncologists and surgeons, will tell you that they cannot guarantee zero side effects. They will then tell you their complication rates. Those are real percentages that you need to take into account.

What other research did you do?

I read all the books on prostate cancer that were in print at that time, as well as books that came out later. I would read whatever books my doctor and I could find. I was always getting some new information from them.

But the biggest part of my due diligence was going through the raw data and reading scientific papers by the hundreds. I visited Web sites, attended meetings, and watched presentations that were posted online. I’d estimate that I spent three or four hours a day for about 18 months doing research.

That’s an incredible amount of time! Did you not believe what you’d been hearing? Or was there a disparity between what your friends were saying and what you read in scientific papers?

What gradually became clear to me is that when you have early-stage prostate cancer, no one will tell you what to do because you have so many options. At the same time, none of the options are guaranteed to beat the cancer. And even if you do beat it, you may not really beat it.

With each option you face different probabilities of side effects. I realized that the good thing about early-stage prostate cancer is that I had a lot of options, but the difficult part is that no one can give you a definitive answer. It’s not like having a late-stage cancer when your doctor says, “You need to have surgery tomorrow, because if you don’t, you will be gone in six months.”

I was playing around with the probabilities of different outcomes, trying to gain some perspective and make the best choice for my personal situation based on my values and my perceived life expectancy. So once I calmed down, I decided to invest an enormous amount of time in research. And being retired at that point, I had the time.

So how did you settle on active surveillance?

It was a very tough decision. I was trying to balance the risks with the potential rewards. I gradually became convinced that I was taking a reasonable risk with active surveillance. If my cancer had already metastasized, then neither surgery nor radiation would do me any good — the horse is already out of the stable, so to speak. I’d just be waiting for the symptoms to start and then trying to extend my life with hormones. You can hope that it hasn’t spread, but you can’t forget that it might have. It can spread microscopically, and microscopic spreading cannot be detected by current techniques.

Then I became aware that there are almost no hard data on differences in prostate cancer–specific survival among men undergoing the various treatments. There’s one set of studies from Sweden that shows a very modest advantage for surgery over watchful waiting. But as I said, the advantage is very modest — about 5% after 10 years. And the number of patients in the study was relatively small, and they had more advanced cancers than I did. So I didn’t think the data were definitive or directly applicable to my situation. A more recent study from the same group shows no statistically significant difference in overall survival between the two groups after 12 years. [See “Surgery vs. watchful waiting,” below.]

Then the other factor that went into my decision is that in a lot of cases the cancer will come back after treatment. So obviously either the cancer had spread before treatment, or not all the cancer was removed or destroyed through surgery or radiation. In fact, you can go on the Internet, plug in your numbers, and find out the odds that your cancer will recur if you have surgery or radiation.

On the positive side, prostate cancer has a very long natural history. For many men, the diagnosis occurs at a time when it doesn’t really matter because their life expectancy is such that something other than prostate cancer is going to kill them first.

With active surveillance, patients need regular biopsies. Was that a stumbling block in your decision to pursue active surveillance?

No. To be honest with you, without the anesthesia, it was quite unpleasant. But since my urologist started using local anesthesia, biopsies haven’t been a big deal.

How did your family react to your active surveillance decision?

My wife participated in many of my meetings with physicians, and she’s read all of the books I have and some of the scientific papers, too. Like me, she was concerned about the various side effects of treatment. She was very empathetic and helped me sort out the options, making it clear that she’d support whatever decision I made. If I had said, “I want surgery immediately,” she would have supported it.

She played a major role in calming me down, too. We talked about beating the cancer, but we knew that it might not go away. She encouraged me to think about managing the situation toward an acceptable outcome — acceptable in terms of the trade-offs, what I could and couldn’t live with.

Having been a businessman involved in the early stages of companies, I know that you have to make decisions even when you don’t have all of the facts you’d like to have. You use the information you have to decide where to spend money, how to invest resources, and what projects to take on. As you gather more data, you either continue down the same path or change directions. I started to think of my medical situation the same way. There’s a lot more information I’d like to have, but I manage as best as I can with what I know.

Under what circumstances would you stop active surveillance and turn to surgery, radiation, or another form of definitive treatment?

There are generally accepted criteria for who is a good candidate for active surveillance. [See “Suggested criteria for active surveillance,” below.] For example, the PSA should be under 10 ng/dl. Mine is 5 ng/dl. The PSA doubling time should be slow. Mine is incredibly slow — it’s taken nine years to go from 4 to 5 ng/dl, and that isn’t anywhere near double. The Gleason score should be less than 7. Mine is 6, so that fits. My tumor is an early-stage tumor, and I had cancer in fewer than three biopsy cores. As long as you have cancer in only one or two cores, and it’s in less than 50% of the core sample, you fit the criteria. I am completely under this umbrella. [See Figure 2 below.]

So if your PSA suddenly jumped to 10 ng/dl, would you opt for treatment? Or would you want to see changes in multiple factors before changing course?

Well, the first thing I would do is get another PSA test. PSA can change for reasons other than prostate cancer. But if my PSA moved from 5 to 10 ng/dl within one or two years, it would be a huge red flag that the cancer was advancing. I’d also look at recent biopsy results. Most importantly, did the Gleason score go up? Or has cancer been found in three or more cores? Is cancer in 50% or more of any core? Those would all be indications that the tumor is growing. If I move significantly out from under the umbrella of the generally accepted criteria for active surveillance, I will go ahead with treatment. [See “Guidelines for intervention,” below.]

Given all of the potential treatments, which one would you choose?

I haven’t made that decision yet. I will cross that bridge when I have to.

Treatment definitely makes sense if you don’t fit the active surveillance criteria, but the techniques and technologies are improving very, very fast. For example, surgeons are getting more experienced with the da Vinci robot, so robotic surgery may not have some of the disadvantages of traditional surgery. Radiation techniques are evolving very fast. One of the patients I consulted has undergone treatment with CyberKnife, which is a new technology. It’s too early to tell, but this technology might have a lot of advantages over other types of radiation therapy. And improvements in imaging technology are making the placement of radioactive seeds more accurate.

Several centers are getting more experienced with high-intensity focused ultrasound [HIFU] and cryotherapy. These technologies are still experimental, but researchers are doing clinical trials in the hope that these technologies will gain FDA approval in a couple of years.

Right now, I’m just trying to buy time. Every year that I don’t have to deal with the side effects of a treatment is a year that I’ve won. Perhaps if I’m lucky, by the time I have to choose a treatment, one will have proven to be clearly superior, and my choice will be easier.

How do you keep up to date on all of the technological advances? Do you still read everything you can find?

I’ve gotten over my obsession with reading dozens of scientific papers each month, because I now feel I have a strong knowledge base. I concentrate on just a few select things, such as understanding the improvements in HIFU and following what happens with CyberKnife and other radiation therapies. I’m also focusing on improvements in robotic surgery. One of the challenges there is to reduce side effects like urinary incontinence.

What advice would you give to readers in a situation like yours who don’t have the time or resources to study prostate cancer to the extent you did?

I would strongly advise people not to make any decisions while they feel panicked or depressed because the decision is likely to be wrong. You want to make a decision after you have calmed down and accepted the fact that you have this disease and that you are not alone. If you are diagnosed with early-stage disease, you have time to make a decision.

Next, I would recommend consulting with at least three physicians: a urologist, an oncologist, and a radiation oncologist. If you are seriously considering surgery, talk with both a robotic surgeon and a traditional surgeon. Do not be afraid to get a referral to another specialist for a second opinion, even if the first opinion is from a top surgeon. Talk to someone from a different institution. When we’re patients, we’re all reluctant to ask for a second opinion. You just have to get over that. That’s part of doing your due diligence.

I would also recommend reading a couple of the major books on the subject because they’ll give you good background. But keep in mind that most of them have been written by prominent surgeons and are biased in favor of surgery. There are good Internet sites, too. I’d recommend the National Cancer Institute’s site, www.cancer.gov.

If you could direct prostate cancer research, where you would place the most emphasis?

I think the biggest challenge is to find a way to differentiate indolent prostate cancer and aggressive prostate cancer. It’s critical for patients; they need to make informed treatment decisions. It’s also critical for the health care system in general. The cost of treating people who don’t really need it has to be extremely high. In the long term, I think we need to better understand what causes prostate cancer. Ultimately, that might help us prevent it.

Any final comments?

I’m in good health. I’m very fit. I exercise two to three hours a day, and have done that all my life. My parents lived to be 94 and 100 years old. I thought that I was pretty much indestructible. So, this diagnosis changed my life. I became much more aware of my own mortality.

I slowed down after the diagnosis. I was already retired, but I disengaged from many commitments that involved lots of meetings or a great deal of time. I wanted to have more control of my own time. I started to eliminate the activities in my life that I didn’t find fun or that were frustrating. I have a much higher appreciation of time as a resource — and that it’s vanishing faster than I once thought. I feel fortunate that my condition isn’t worse, and I’m reasonably optimistic that I can achieve a good outcome.

Originally published Jan. 1 2009; last reviewed March 11, 2011.