If you’re living with advanced prostate cancer, you’ve probably heard others tell you to stand up for yourself. But what does it take to be a self-advocate? It means taking an active role in your care by listening, learning, asking questions, and connecting with others.
Being your own advocate does not mean taking sole responsibility for your cancer treatment. Instead, it helps to put you in a team mentality and learn that you are an important part of your healthcare team. By taking an active role in your prostate cancer treatment, you will help ensure that you receive the treatment that is most appropriate for you.
Understanding your cancer and its treatment can help you deal with the emotional roller coaster ride that can come with managing the disease.
“When people are diagnosed with prostate cancer, they often feel powerless and shocked,” says Ramdev Konijeti, MD. He is the Director of the Genitourinary Cancer Program at Scripps MD Anderson Cancer Center. “But education is information, and information is power.”
Your doctor or clinic should be able to point you to the best resources to better understand your cancer. In general, websites ending in .gov, .org, or .edu or citing their sources have the most reliable information.
“As with any large body of information, misinformation can be found,” says Konijeti. “There is much public information available about prostate cancer that minimizes the impact of the disease or unduly increases the impact of the disease.”
Murray Wadsworth, 63, says he became a “patient detective” after his advanced prostate cancer diagnosis 6 years ago. “I had to learn to look for clues and get rid of anything that wasn’t right for me,” he says. “I say ‘patient detective’ because I want to remind myself that I’m just the patient. I don’t want to get too ahead of the doctors.”
Some websites where you can learn more are:
You may feel nervous about asking medical experts for more information, better explanations, or even a second opinion, but it is your right to find out as much as you can about your cancer and its treatment.
A good medical team should welcome your questions, says Konijeti. “The overwhelming majority of physicians who care for patients with prostate cancer understand the complexity of your experience and want to help you.”
Keep a list of concerns so you remember what to ask each time you visit. Some things you might want to know are:
“It’s extremely important to understand where you fit on the disease spectrum, how treatment may or may not affect you, and how that affects your larger life goals,” says Konijeti.
It was important for Wadsworth to understand exactly what he was facing in plain language.
“There were a lot of terms thrown around like ‘undetectable’ and ‘recurrence’ and ‘relapse’ and ‘no sign of disease,'” he says. “So I would ask very specific questions like ‘Can I be cured?’ I needed her to get to the point and say to myself, what does it all mean?”
Many communities have local prostate cancer support groups, organized by either patients or healthcare professionals. These groups can be useful for getting to know others who may also have undergone diagnosis and treatment.
Wadsworth says he spotted several prostate cancer groups on social media. “I’ve actually learned from a few men by reading what they post and speaking to those further down the path than me with relapses.”
Wadsworth and Konijeti point out that while these groups can be a great way to build community, they can sometimes lead to misinformation.
“Prostate cancer is a very heterogeneous disease and not everyone shares similar experiences,” says Konijeti. “And the treatment of prostate cancer is not necessarily a one-size-fits-all solution. Just as the disease exists on a spectrum, so do the treatments. The choice or intensity of treatment can often depend on the degree of aggressiveness of the disease.”
So typically, groups are great for emotional support, relationships, storytelling, and advice, but rely on medical expert advice on risks, benefits, and alternatives to screening and treatment.