This spring, the US Preventive Services Task Force updated its recommendations for prostate cancer screening, saying that men age 55 to 69 years should consult their doctors to make individual decisions about whether to undergo this screening. They can take into account current evidence of its potential benefits and harms.
But far less information is available to help men make choices about what to do if a screening finds cancer that is localized and at low risk of spreading. Even though prostate cancer is very common—approximately 3 million American men have it—it usually grows very slowly and for some, may not ever cause problems. Men diagnosed with low-risk prostate cancer have several choices, including surgery, radiation, and active surveillance, which includes repeated testing. (See box below, A Patient Partner's Experience) A recent study found that these three options give men the same high likelihood of surviving for 10 years. But as newer forms of the treatments have been developed, little data have been available about how the treatment options affect men’s quality of life.
To mark Men’s Health Month, we spoke with the lead researchers for two PCORI-funded studies that are helping fill that evidence gap. Both studies involved men with localized prostate cancer at relatively low risk of spreading elsewhere in the body. In the studies, about 3,700 men decided with their doctors which of several treatments to pursue; the research teams then tracked men’s self-reported quality of life over the next two to three years. The teams recently published results in JAMA.
How can your studies help men decide about treatment options?
David Penson: What we found is that if you choose an aggressive therapy, you’re going to have worse quality of life. Compared to men who chose other paths, surgical patients were more likely to report sexual dysfunction and more likely to report urinary incontinence three years after their treatment.
We did find that the radiation group’s outcomes were better than in previous studies with older therapies, but there were still some quality-of-life decreases to consider. Patients often live a decade or more after diagnosis. The take-home message is patients who can safely do active surveillance should consider that very carefully.
Ronald Chen: Our results were similar. With contemporary surgery, we did still see more urinary leakage and erectile dysfunction than with the other options.
Most men and their families care about choosing the option that maximizes their survival. We now know through a randomized trial published last year that the survival rates of patients who start on active surveillance versus radiation or surgery are equivalent after 10 years. If that’s the case, quality of life becomes a very important consideration.
Contemporary radiation treatments did cause short-term urinary irritation and modest amounts of short-term bowel irritation. But when we followed these men for two years, we saw that these symptoms largely went away. Given that result, some men may say, “It makes sense to choose a treatment that gets rid of my cancer and gives me similar long-term quality of life.” It comes down to each patient’s decision with his doctor.
The ultimate goal is to give men good information at the time of their diagnosis so that they can make informed decisions.
Why did we need these studies? What evidence gaps did they fill?
Ronald Chen: Different types of treatment for prostate cancer can cause different sorts of side effects, but treatments have evolved pretty radically to try to reduce those effects. There had not been a comparison of quality of life effects of contemporary treatments to help patients make this important decision.
David Penson: Our two studies looked at contemporary therapies, including robotic surgery and advanced radiation treatments. That makes the data relevant and germane to men who are diagnosed today. These are the treatments they’ll have to choose among.
Our studies reflect real-world practice. Many patients don’t have access to a high-volume surgeon or high-volume radiation oncologist. We used registries of men in Utah, New Jersey, Louisiana, Atlanta and rural Georgia, and the Los Angeles Basin. Dr. Chen’s study included men across North Carolina. The participants received the care that would normally be available to them.
Ronald Chen: The stakeholders wanted a study that was generalizable, not just taking place at big academic institutions. And they told us that quality of life was the most important outcome.
David Penson: The two studies had some differences in their methods but have very similar results. It gives us extra confidence. The ultimate goal is to give men good information at the time of their diagnosis so that they can make informed decisions.
I had no interest in prostate cancer until my biopsy came back positive, and at first, I didn’t understand doctors’ language. I told my urologist that I just wanted the cancer out. But he explained that I had choices to consider.
With intermediate-risk prostate cancer, I could have chosen radiation or surgery. A radiation oncologist met with me for two hours and at the end said, “Yes, I can do it, and most likely I can keep you safe for a long time. But,” he said, “your preference doesn’t match up with what I do. You’re an engineer—you’re going to wake up at 2 in the morning every night wondering, is there a cell out there that radiation missed?” He and others helped guide me through the swamp of making that decision.
So, I had surgery. Following my recovery, a doctor asked if I would talk with prostate cancer patients who had recently been diagnosed and wanted to talk to someone who had gone through the decision-making process.
Fast-forward to six years after my diagnosis. I became a member of the patient advisory group for the PCORI project. Shortly after that, I became a full-fledged member of the research team. Dr. Penson said, “I want both your questions and your input out there on the table.”
I’d had my prostate removed with robotic-assisted, minimally invasive surgery performed by a very experienced surgeon. I lost my sexual function, which I knew might happen. That loss has been extremely difficult for my wife and me. We’ve been married for 52 years, and that is sacred ground for us. But we would choose surgery again, for the same reason: it met our preference of minimizing the risk of cancer recurrence.
After treatment, prostate cancer patients start making adjustments. In year one, a man might have a urologic issue, but by year three, he most likely will have adapted to it, and it doesn’t bother him the way it used to. For a research team to know what adjustments might be required, you need to talk to patients who have battled cancer. This is one of the things that keeps me interested in this project, which has involved patients at every step.
Ten years after my diagnosis, I’m still here. And for as long as I live, I will work to improve the outcomes of those who are yet to be diagnosed. (Back to top)
The views expressed here are those of the authors and not necessarily those of PCORI.