If you’re living with advanced prostate cancer, you’ve probably heard others tell you to “advocate” for yourself. But just what’s involved in being 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 doesn’t mean taking sole responsibility for your cancer treatment. Instead, it helps put you in a team mindset and learn that you’re a key part of your health care team. When you take an active role in your prostate cancer treatment, you help make sure that you’re getting the care that works best for you.
Learn About Your Condition
Understanding your cancer and its treatment can help you deal with the emotional rollercoaster that can go along with managing the disease.
“Often, when people are diagnosed with prostate cancer, they feel powerless and shocked,” says Ramdev Konijeti, MD. He’s 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 for understanding your cancer better. In general, websites that end with .gov, .org, or .edu, or cite their sources, will have the most reliable information.
“As with any large body of information, you can find misinformation,” Konijeti says. “There is plenty of available public information about prostate cancer that minimizes the impact of the disease or that inappropriately magnifies 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 how to look for clues and get rid of everything that wasn’t right for me,” he says. “I say ‘patient detective’ because I want to remind myself I am just the patient. I don’t want to get ahead of the doctors too much.”
Some websites that can help you learn more include:
- American Cancer Society
- Prostate Cancer Foundation
- National Cancer Institute
- Urology Care Foundation
- National Comprehensive Cancer Network
You might feel nervous asking medical experts for more information, better explanation, or even a second opinion, but it’s your right to find out as much as you can about your cancer and treatment.
A good medical team should welcome your questions, Konijeti says. “The overwhelming majority of physicians who care for patients with prostate cancer understand the complexity of your experience and they want to help.”
Keep a list of concerns to help you remember what you want to ask in each visit. Some things you might want to know include:
- Is there any evidence my cancer has spread?
- What are my treatment choices? Which do you think is best for me?
- What’s the goal of my treatment?
- What side effects might I have?
- What should I do to get ready for my treatment?
- How often will I have treatments and how long will they last?
- Will I need to miss work during treatment?
- What are the costs involved?
- Should I consider joining a clinical trial?
“Understanding where you fit on the spectrum of the disease, how treatment may or may not affect you, and how that plays into your overarching life goals is extremely important,” Konijeti says.
For Wadsworth, it was important to understand exactly what he was facing, in plain language.
“There were lots of terms thrown around like ‘undetectable’ and ‘recurrence’ and ‘relapse’ and ‘no evidence of disease,'” he says. “So I would ask very specific questions, like, ‘Can I be cured?’ I needed them to cut to the chase and tell me: What does all this mean?”
Connect With Others
Many communities have local prostate cancer support groups, organized either by patients or health professionals. These groups can be useful for getting to know others who may also have gone through diagnosis and treatment.
Wadsworth says he discovered several prostate cancer groups on social media. “I’ve actually learned from a few men by reading what they post and dialoguing with those who are further down the road than I am with recurrence.”
Wadsworth and Konijeti caution 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,” Konijeti says. “And treatment for prostate cancer is not necessarily ‘one size fits all.’ Just as the disease exists on a spectrum, so do the treatments. The choice for, or intensity of, treatment can often depend on the degree of aggressiveness of the disease.”
So as a general rule, groups are great for emotional support, relationships, shared stories, and advice, but rely on the counsel of medical experts when it comes to risks, benefits, and alternatives to screening and treatment.