How to Get Involved in Your Treatment Choices for Prostate Cancer

"In the late ‘80s, we found that men with prostate cancer wanted the least involvement in making their treatment decision," says Lesley Degner, RN, PhD. "How things have changed!"

Early-stage prostate cancer is also called localized cancer. It’s cancer that has not spread outside of the prostate gland. There are now more treatments available that may cure prostate cancer at this stage. And the side effects of treatment can change a man’s life. This causes many men to get more involved and to seek more information to make the "best choice," as described by Donna Berry, RN, AOCN^® , PhD. So today, most men who have recently been diagnosed with early-stage prostate cancer will not be content with saying, "Yes, doctor, whatever you think is best."

Degner and Berry each have more than 25 years of experience studying people’s decision making and response to cancer. Both have recently published new research.^1,2 Here’s their advice on how you can make the best treatment choice for you.

Start Influencing Your Care with the Biopsy

You may have a PSA level that is higher than normal. Or you may have some of the symptoms of prostate cancer. Your doctor or nurse will ask questions about them and do a physical exam and perhaps other tests. If test results suggest that cancer may be present, your doctor will order a biopsy of your prostate. A biopsy is the only sure way to know whether a problem is from cancer.

It takes about a week for the biopsy results to come back. "Doctors have their own preferences and styles," says Berry . That doesn’t mean you have to wait to see what those are. "Men should ask their doctor before the biopsy how they will hear about the results. For instance, they can say, ‘will you call me with the results, or will you let me know at my next appointment?’"

Take Time to Learn About and Consider All Your Treatment Choices

If you have cancer, you should start learning about treatment options soon. Many men find themselves shocked to learn that they have cancer. This can make it hard to take in all the information. It’s common to feel like you need to decide on a treatment quickly so that the cancer doesn’t spread. "Men shouldn’t feel rushed to make a treatment decision even if they or their family members are feeling anxious about it," says Degner. "A lot of people who are diagnosed with cancer think it’s growing like a mushroom. While there are some tumors that are extremely aggressive and very rapidly growing, the majority of prostate cancer tumors have been there for a long time. They were just undetectable."

If you can tolerate waiting, and your doctor says it’s OK because your cancer is not growing fast, try to slow down the treatment decision-making pace. "Think very carefully about what you’re doing and look at all the options," says Degner.

"With prostate cancer, it’s never a bad idea to get a second opinion. In fact, it’s a good idea!" says Berry . "The treatments for prostate cancer are very diverse, so many men get more comfortable with the choices they have when they talk with different specialists." Berry and Degner advise that you consider getting a second opinion as soon as you hear the biopsy results and treatment recommendations.

Help Your Doctor Get to Know You So That Your Treatment Is Tailored to You

Before hearing about the different treatment options, tell your doctor about yourself. "What happens too often is that we, the healthcare staff, load the man up with information, and we don’t listen," says Berry . "The conversation should focus on what the doctor needs to know about you so that decisions can be framed around who you are and how the treatment fits into your life."

Both Degner’s and Berry ’s studies showed how personalizing the treatment discussion can help men with their decision. Degner’s study looked at 74 couples in which a partner was newly diagnosed with early-stage prostate cancer. In counseling sessions, these men and their partners talked about what was most important to them at the time of diagnosis. For instance, for some men, sexuality after treatment was most important. So these men were given information about how treatment would affect their sexuality. Four months after diagnosis, most men who received individualized information reported that they took on a more active role in making decisions and that their partners took on less of a role than they thought they would. Plus, everyone involved had lower levels of stress. Berry ’s study looked at 44 men who were within 6 months of a diagnosis of early-stage prostate cancer. The study was to see how men came to "making the best choice" for treatment. The researchers concluded that men make the best choice for themselves based on the medical information they received from all sources (the first doctor, second opinions, the Internet, friends, etc.), plus personal factors (their job, past experiences with cancer, etc.). "The healthcare team has to customize the education they give men based on who they are and what they do," says Berry . "It’s not enough to just provide medical information."

You may have to start the conversation about yourself; don’t depend on your doctor to do so. "At a minimum, men should be talking about what they do for a living, for recreation, who they know who’s had cancer, and the stories they’ve heard about men with prostate cancer or other people who’ve had cancer," says Berry . "Men can make a decision based on misinformation if they haven’t talked with their doctor about what they’ve heard and what their priorities are." Berry recommends that you lead your doctor toward this discussion by saying, "Well, before I hear about the treatment options and outcomes, I would like to tell you more about myself because it has a lot to do with my decision." For instance, you might say, "I have a job where I must walk outside a lot. It’s really important that you know that I can’t get to a bathroom on the job, and I can’t afford to take too much time off." When your doctor knows this kind of information, then he or she can personalize the treatment discussion with you.

Here’s an example. Your doctor will need to talk with you about one side effect of treatment--incontinence. It’s a condition in which you can’t control your urine flow and urine leaks. Once your doctor knows your situation, rather than saying, "Your chances of incontinence are 15%," he or she can say, "Your chances of incontinence are 15%, and if you have surgery, you may have to be prepared to take 6 months off work to resolve this side effect." When you share information about yourself, your doctor may be better able to put the facts about cancer and its treatment into a personal context for you.

Ask Questions When You Learn About Your Treatment Choices

”Since there is no one best treatment for localized prostate cancer, most men are given a choice in treatment," says Berry . "The doctor and the man must work together to decide." Here’s some advice from Berry and Degner about the kinds of questions you should ask.

Are these my only options for treatment?

Most men are offered the major treatment options of surgery or radiation, and they are usually told about “watchful waiting.” That’s when your doctor may suggest that you don’t start treatment right away. Instead, you will have regular visits with your doctor to have tests that keep tabs on how the cancer is growing. Whether your doctor discusses other options, such as cryosurgery or hormone therapy, depends on the doctor. "It’s hard to imagine that a doctor who has spent 10 to 20 years learning to do surgery would say that surgery is not a good option," says Berry. That’s why she suggests that you talk with doctors from various specialties so that you can gather more information.

Will this treatment cure me of cancer?

"In our research, we have found that thousands of men, even if they’re not able to say it, want to know their chances of a cure and how far the disease has spread," says Degner. "Write down your top questions before you see your doctor and don’t leave without having them answered. Ask the questions that mean the most to you. If you have trouble asking them directly, give your questions to the doctor on a piece of paper."

What’s your experience with this treatment?

Ask about your doctor’s record. For instance, how much experience does the doctor have doing the treatment? Does he or she perform this treatment 2 or 100 times a year? This will be a bigger issue in a small town or a more rural setting, where a doctor may not have a large volume of patients. Ask about and listen for what your doctor’s outcomes are. For instance, what percent of the men that your doctor performs surgery on cannot control their urine afterward and what percent are able to be totally dry? "Doctors will often quote the literature," says Berry . "But you don’t want a quotation of an unknown expert. You want to base your decision on the record of the doctor whose office you’re sitting in." Ask the doctor about his or her personal statistics, not national ones.

How much of my time will this treatment take?

Ask about the treatment scheduling. How often will you be having treatment, how much time does it take, and how much follow-up will it require? Ask who will work with you on making the treatment decision and who will work with you after you’ve made it. "These questions are important, so you know what the routine is going to be," says Berry .

How will this treatment affect me in the long run? What will my life be like after I have it?

"It’s not just the short-term stuff that you have to think about," says Degner. "Make sure you also ask about the long-term side effects." For instance, with prostate cancer, there are two common side effects. One is the inability to get an erection, called erectile dysfunction. The other is leaking urine, called urinary incontinence.

"Often times you’re just focused on getting through the treatment, which is important," says Degner. "But most men go on and survive their cancer and live to die of something else. You don’t want to be living with the serious side effects of your cancer treatment for the rest of your life. But if you have to, it would be nice to know about it before you’re treated, so you can at least make the choice."