When you’re diagnosed with prostate cancer, be proactive.

Prostate cancer is somewhat unique in the cancer world: More men die with it than from it. The cancer is pervasive, but for most men, not deadly. Knowing where you stand in the spectrum of the disease is important to understanding how you’ll need to be treated — if at all, since many men live with cancer cells without ever needing treatment. Most likely, an elevated prostate specific antigen test got you in the door of subsequent cancer testing. Here are 10 questions to ask your health care provider if you’ve been given a prostate cancer diagnosis.

Do I really have cancer?

The PSA test is “not a perfect blood test, but it is the best method for finding men who might have prostate cancer,” says Vincent Laudone, a urological surgeon at Memorial Sloan Kettering Cancer Center in New York. Most men will not have symptoms of prostate cancer, so the PSA can tip doctors off to the disease. However, an elevated PSA often indicates an enlarged prostate, a condition men typically get as they age. Infections can also cause elevated PSAs. The only way to rule out (or diagnose) cancer is with a biopsy.

What is the grade of my cancer?

Unlike school grades, tumor grades come in low, medium and high, in order of aggressiveness. In prostate cancer, the Gleason score measures the grade on a scale of six to 10. The higher the number, the more aggressive the tumor. A pathologist looks at the cells and determines how abnormal they look with respect to normal prostate cells, which clump together in “nice little glands,” Laudone says. “Cancerous cells separate from the group. Eventually they become totally independent.”

How much cancer do I have?

During a typical biopsy, the doctor takes 12 to 14 cell samples, Laudone says. “How many of those samples showed prostate cancer, and how much?” he says. If the samples contain many cancer cells, you might get further tests — an MRI and bone scan — to determine whether the cancer has spread beyond the prostate. “All of that becomes part of the staging system,” Laudone says, adding that a rectal exam is part of the staging process. Stages one and two mean the cancer is in the prostate; three means it may be outside; and four means it has likely spread to the bone or other organs.

Are stage and grade related?

“The two tend to correlate,” Laudone says. “More aggressive cancers usually are associated with higher-grade cancers. Conversely, the less aggressive the cancer, the lower the stage is likely to be.” However, they are not equivalent, he continues. You could have a non-aggressive cancer but a lot of it, or it could be outside the prostate. A high-grade cancer confined to the prostate is better than a low-grade one that has already spread, Laudone adds.

Does my cancer need to be treated?

“Active surveillance” is a buzz term in prostate cancer care because many men with the disease can practice it for years without treatment. “If you have low-grade, low-stage cancer, you may elect to do nothing,” says Erik Castle, a urologic surgeon and urology professor at the Mayo Clinic in Phoenix. Even younger men with similar cancer types can often afford to forgo immediate treatments, instead opting for bi-annual biopsies and cancer preventive lifestyles to keep tabs on early-stage disease. Whatever the case, take your time to decide. “It’s rare that prostate cancer needs to undergo immediate treatment,” Laudone says.

What are my treatment options?

If treatment is necessary, and the cancer is only in the prostate, it generally falls into two categories: radiation and surgery. Men with metastatic disease may need systemic chemotherapy. Surgery falls into two categories as well: open or minimally invasive, which includes laparoscopic and robotic. Robotic is the most common surgery performed, Laudone says. “It’s thought by many to be a little more precise, and it allows for quicker recovery.” But outcomes depend on your surgeon, he continues. “The key is that you want to have somebody that has significant experience with the treatment option they are recommending,” he says.

What are the side effects of my treatments?

“There’s no treatment option that doesn’t have potential for side effects,” Laudone says. These center on two issues: urinary leakage and erectile dysfunction, Laudone says. Bowel problems may also occur. However, “the majority of patients that are treated ultimately do well from a cancer perspective and recover from their treatments with minimal side effects,” he continues. “But that’s not all, and that’s why [treatment] is a major decision to be carefully considered.” Hormone treatment, which is sometimes used after radiation, may be like “menopause for men,” Castle says, adding that it can cause hot flashes, osteoporosis and heart effects.

Should I get a second opinion?

Yes, experts say. “I encourage all my patients to get second opinions, and in particular from specialists who do things I don’t do, like radiation treatment,” Laudone says. Also, if you’re opting for surgery, scope out your surgeon’s skill with the various types of procedures, and if possible, go to a place with wide-ranging expertise. Seek a support group to ask fellow patients about doctors and their reputations, says Tom Kirk, president and CEO of Us TOO International Prostate Cancer Education and Support Network.

How can I prevent my cancer from recurring?

There’s no sure-fire way to prevent prostate cancer from recurring, since current imaging tools cannot pick up microscopic spread of the disease that occurred even before treatment, Laudone says. Some men may undergo adjuvant radiation after surgery or hormonal therapy after radiation to help prevent recurrence. Maintaining a heart healthy, low-fat diet also helps, along with regular exercise and minimizing stress, he adds. And get regular PSA tests — the simple, reliable way to tell if the cancer cells are growing again. “If it starts to climb, we will re-evaluate the patient,” Laudone says.

Where can I talk to people about my condition?

“Never shut down and go quiet,” Kirk says. “There are thousands of people who are willing to talk to you, and it’s important to to talk about what’s on your mind.” Kirk’s organization has a HELP line, along with electronic support groups that are affiliated with some 300 support groups in the U.S. Other patients can help vet physicians. “You need to be active. We live in a time when physicians have less time to talk to you,” Kirk says. So when you’re with a physician, he adds, “Don’t be shy. Bring someone with you to take notes, or record the visit.”

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10 Questions to Ask Your Doctor About Prostate Cancer originally appeared on usnews.com