If you’re living with advanced prostate cancer, you’ve probably heard from others that you need to “stand up” for yourself. But what exactly does it mean 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 you take sole responsibility for your cancer treatment. Instead, it helps you get into a team mentality and learn that you are an important part of your healthcare team. When you take an active role in your prostate cancer treatment, you ensure that you get the care that works best for you.
Learn more about your condition
Understanding your cancer and its treatment can help you cope with the emotional rollercoaster 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 that end in .gov, .org, or .edu, or cite their sources, will contain the most reliable information.
“Just like with any large amount of information, you can encounter misinformation,” Konijeti says. “There is sufficient public information available about prostate cancer that either minimizes the impact of the disease or inappropriately increases the impact of the disease.”
Murray Wadsworth, 63, says he became a ‘patient detective’ after his diagnosis with late-stage prostate cancer six years ago. “I had to learn how to look for clues and remove anything that wasn’t good 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 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 is your right to learn as much as you can about your cancer and its treatment.
A good medical team should answer your questions, says Konijeti. “The vast 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 things to consider so you can remember what to ask for each visit. Some things you may want to know include:
- Is there any evidence that my cancer has spread?
- What are my treatment choices? Which one do you think is best for me?
- What is the goal of my treatment?
- What side effects might I have?
- What should I do to prepare for my treatment?
- How often will I receive treatments and how long will they last?
- Do I have to miss work during treatment?
- What costs are associated with this?
- Should I consider participating in a clinical trial?
“It is extremely important to understand where you fit on the spectrum of the disease, how treatment may or may not affect you, and how that affects your overarching life goals,” says Konijeti.
It was important for Wadsworth to understand in plain language exactly what he was dealing with.
“There were a lot of terms used 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 this all mean?”
Connect with others
Many communities have local prostate cancer support groups, organized by patients or health professionals. These groups can be helpful in getting to know others who may also have undergone diagnosis and treatment.
Wadsworth says he discovered several prostate cancer groups on social media. “I’ve actually learned from a few guys by reading what they post and talking to those who are further down the road than me with repetition.”
Wadsworth and Konijeti warn 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 ‘one size fits all’. Just as the disease occurs on a certain spectrum, so do the treatments. The choice or intensity of treatment can often depend on the degree of aggressiveness of the disease.’
So in general, groups are great for emotional support, relationships, shared stories, and advice, but rely on the advice of medical experts when it comes to risks, benefits, and alternatives to screening and treatment.