If you’re living with advanced prostate cancer, you’ve likely heard others tell you to “stand up” for yourself. But just what is involved in being self-defense? It means taking an active role in your care by listening, learning, asking questions and communicating with others.
Being your own advocate does not mean taking full responsibility for your cancer treatment. Instead, it helps put you in a team mindset and know that you are an essential part of your healthcare team. When you play an active role in treating prostate cancer, you help make sure you get the care that works best for you.
Know your status
Understanding and treating cancer can help you deal with the emotional outbursts that go with managing the disease.
“Often, when people are diagnosed with prostate cancer, they feel helpless 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 direct you to the best resources to better understand your cancer. Generally, websites ending in .gov, .org, or .edu, or citing their sources, will contain the most reliable information.
“As with any large body of information, you can find misinformation,” Konijeti says. “There is a lot of public information available about prostate cancer that underestimates the impact of the disease or inappropriately increases the impact of the disease.”
Murray Wadsworth, 63, says he became a “patient investigator” after being diagnosed with advanced prostate cancer 6 years ago. “I had to learn how to look for clues and get rid of everything that didn’t work for me,” he says. “I say ‘patient detective’ because I want to remind myself that I’m just a 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 may feel nervous asking medical experts for more information, a better explanation, or even a second opinion, but it’s your right to learn as much as possible about cancer and treatment.
Conte says a good medical team should welcome your questions. “The vast majority of doctors who care for prostate cancer patients understand the complexity of your experience and want to help.”
Keep a list of concerns to help you remember what you want to ask at each visit. Some things you might want to know include:
- Is there any evidence that my cancer has spread?
- What are my treatment options? Which one do you think is best for me?
- What is the purpose of my treatment?
- What side effects might I experience?
- What should I do to prepare for treatment?
- How often will I have treatments and how long will they last?
- Will I need to be absent from work during treatment?
- What are the costs involved?
- Should I consider joining a clinical trial?
“Understanding where you fit into the disease spectrum, how treatment may or may not affect you, and how this plays into your overall life goals is critical,” says Konijeti.
For Wadsworth, it was important to understand exactly what he was facing in plain language.
“There was a lot of terms thrown around like ‘undetectable,’ ‘recurrence,’ ‘relapse,’ and ‘no evidence of disease,'” he says. ‘So I would ask very specific questions, like, ‘Can I be cured?’ “I needed them to get in the way and tell me: What does all this mean? “
Communicate with others
Many communities have local prostate cancer support groups, organized by either patients or health professionals. These groups can be useful for identifying others who may also have undergone diagnosis and treatment.
Wadsworth says he’s spotted several prostate cancer groups on social media. “I’ve actually learned from a few guys by reading what they post and chatting with those in the way more frequently than I am.”
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 heterogeneous disease and not everyone shares similar experiences,” says Conetti. “And treatment for prostate cancer is not necessarily ‘one-size-fits-all.’ Just as disease is found in a broad spectrum, so there are treatments. The choice or severity of treatment often depends 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 they rely on the advice of medical experts when it comes to risks, benefits, and alternatives to screening and treatment.