It’s not the news you wanted to hear from your doctor—“You have prostate cancer.”

Fortunately, as with 97% of men diagnosed with this cancer, it hasn’t spread to other parts of your body.

Whew.

Even better news: Your cancer is classified as “low risk,” which means your risk of dying from it over the next 15 years is less than 1%.

Now you have to decide what to do. Treatment such as surgery, hormones or radiation entails side effect risks such as erectile dysfunction and urinary incontinence. These days, in a big change in medical practice, more and more men who are newly diagnosed with low-risk prostate cancer have options that entail not seeking immediate treatment.

But here’s the problem: Many men make the wrong choices, according to a recent study. Here’s what you need to know to make the right ones.

PROSTATE CANCER CHOICES

Researchers at Weill Cornell Medical College analyzed data collected by the National Cancer Institute on about 38,000 men who were 65 or older and had been recently diagnosed with prostate cancer. They then followed the men’s progress over the next few years.

About half of the men were classified as having low-risk prostate cancer based on their Gleason scores, which gauge how aggressive the disease is likely to be. A Gleason score ranges from one to 10, and a score of six or less is considered low risk.

To help identify common mistakes men may make, we spoke with the senior author of the study, Jim C. Hu, MD, a professor of urology at Weill Cornell Medical College and urologic oncologist at New York-Presbyterian Hospital in New York City.

WATCHFUL WAITING VS. ACTIVE SURVEILLANCE

To understand your choices, he explained, it’s key to know the difference between the two options for men if they do not seek immediate treatment—“watchful waiting” and “active surveillance.”

While both strategies entail not being treated immediately, they are very different. The goal of watchful waiting isn’t to cure or even treat the disease. It’s not a good option for men with low-risk cancer. It’s generally for men who, because of advanced age or a medical condition, are likely to die from something else before prostate cancer becomes a mortal threat. If the disease causes symptoms such as pain, these are managed, but the goal isn’t cure.

Men with low-risk cancer, on the other hand, are good candidates for active surveillance. The goal here is to cure the cancer—if it needs treatment at all. In many cases, these cancers don’t even progress, so they don’t really need treatment—and may never need treatment. With active surveillance, Dr. Hu explained, treatment is deferred until the time that there is evidence that the disease is progressing.

Many patients, and even some doctors, confuse the two terms. But here’s why it’s so important to clear up the confusion. With watchful waiting, men don’t really need to get prostate-specific antigen (PSA) or other tests. “In contrast, active surveillance involves monitoring the patient regularly,” said Dr. Hu. Although there is no standard protocol for active surveillance, most recommendations call for repeat PSA tests, office visits for digital exams and a second biopsy within two years of the diagnosis.

Current guidelines recommend active surveillance for most men with low-risk prostate cancer.

FOUR KEY MISTAKES TO AVOID IF YOU ARE DIAGNOSED WITH LOW-RISK PROSTATE CANCER

Here are key mistakes Dr. Hu has identified…

  • Mistake: Automatically opting for treatment when you have low-risk prostate cancer. Even though treatment for low-risk prostate cancer is generally not recommended, in the recent study, more than 85% of the men with low-risk prostate cancer chose to have some sort of treatment. The most common treatment was radiation therapy (58%), and the second most common was surgery (19%). Just 15% opted to skip treatment. The good news is that, as the study went on, there was a trend toward a greater percentage of men opting for active surveillance—a trend that has accelerated according to recent surveys. However, Dr. Hu thinks too many men are still missing out on this proven approach.
  • Mistake: Choosing active surveillance—but not doing follow-up tests. According to the results of this study, fewer than 5% of the men who skipped treatment complied with recommended monitoring. They had fewer office visits, and fewer repeat PSA tests, compared with men who had some form of active treatment—and only 13% underwent a second biopsy within two years, as recommended.
  • Mistake: Automatically opting for active surveillance when you’re in your 40s or early 50s. If you are on the younger side, active surveillance is not always the best choice for low-risk prostate cancer, Dr. Hu said. Why? Because you’ll face decades of tests—which have their own risks.
    “Very young men, around age 50, who are diagnosed with low-risk cancer face decades of follow-up, with repeat biopsies and the stress that goes along with them,” explained Dr. Hu. “The burden of future testing and biopsies may be significant, and biopsies themselves are associated with a 3% risk for serious infection each time. Also, if these men progress to a higher Gleason score and have surgery at an older age, risk for erectile and urinary dysfunction increases. That’s why, other things being equal, men 50 or younger with low-risk cancer should consider treatment right away while they are young and relatively healthier.”
  • Mistake: Getting a treatment recommendation from a urologist who profits from the treatment. This is called “self-referral.” The high rate of radiation therapy for low-risk prostate cancer may be partly a consequence of urologists suggesting a treatment method that generates income to themselves, said Dr. Hu. In the case of prostate cancer, radiation therapy is reimbursed at a much higher rate than surgery or hormone therapy—even though it is not any more effective, on average. Urologists who own equipment to deliver radiation therapy are much more likely to suggest the treatment than other urologists. If your doctor owns the equipment he recommends for treatment, get a second opinion.

HOW TO DO ACTIVE SURVEILLANCE RIGHT

After a diagnosis of low-risk prostate cancer, you may be presented with a range of treatment options. Considering the slow progress of most prostate cancer, active surveillance is a reasonable choice for many men. Even if you live a long time after your diagnosis, your cancer may never become aggressive and cause harm. Often, low-risk prostate cancer hardly progresses at all, even over decades.

If you choose to go the active surveillance route, do it the smart way. Dr. Hu recommends that for the first two years after your diagnosis…

  • Get a PSA test every six months.
  • Have an office visit that includes a digital exam every six months.
  • Within the first two years after diagnosis, get at least one follow-up biopsy as well as magnetic resonance imaging (MRI) and precision medicine tests (which may include genetic analysis) to reduce the risk of missing more aggressive cancer.

What happens next depends on those first two years. If it looks like your cancer is stable and not progressing, your doctor may suggest less frequent follow-ups. But if there is evidence that the cancer is becoming more aggressive, then you can decide at that time whether radiation, surgery, hormone therapy or some combination of these treatments is right for you. You may never need treatment, but if you do, you’ll get it when it’s still highly effective.

To learn more, see the “Bottom Line Guide to Prostate Cancer: Prevention, Screening, Treatment, Recovery.”