How to advocate for yourself for advanced prostate cancer

If you’re living with advanced prostate cancer, you’ve probably heard others tell you to “speak up” for yourself. But what is 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 does not mean taking full responsibility for your cancer treatment. Instead, it helps to put yourself on a team and learn that you are a key part of your healthcare team. When you take an active role in your prostate cancer treatment, you help ensure that you get the care that works best for you.

Learn about your condition

Understanding your cancer and its treatment can help you cope with the emotional roller coaster that can accompany managing your disease.

“Often, when people are diagnosed with prostate cancer, they feel powerless and shocked,” says Ramdev Konijeti, MD. He is director of the Genital Oncology 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 have the most reliable information.

“As with any big information, you can find misinformation,” says Konijeti. “There is plenty of 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 being diagnosed with advanced prostate cancer 6 years ago. “I had to learn to look for clues and let go of everything 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 far ahead of the doctors.”

Some websites that can help you learn more are:

  • American Cancer Society
  • The establishment of prostate cancer
  • National Cancer Institute
  • Institute of Urology
  • National Comprehensive Cancer Network

Ask questions

You may feel anxious asking doctors for more information, better explanations, 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, says Konijeti. “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 to ask at each visit. Some things you may want to know are:

  • Are there any signs that my cancer has spread?
  • What are my treatment options? 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 the treatment?
  • How often will I have treatments and how long will they last?
  • Do I have to miss work during treatment?
  • What are the costs involved?
  • Should I consider participating in a clinical trial?

“Understanding where you fit on the disease spectrum, how treatment may or may not affect you, and how it plays into your overarching goals in life is extremely important,” says Konijeti.

For Wadsworth, it was important 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 evidence of disease,'” he says. “So I would ask very specific questions, like, ‘Can I be healed?’ I needed them to tell me, ‘What does it all mean?’

Connect with others

Many communities have local prostate cancer support groups, organized either by patients or health professionals. These groups can be helpful 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 people by reading what they post and talking to those who are further down the road than me with reps.

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 diverse disease and not everyone shares the same experience,” says Konijeti. “And prostate cancer treatment is not necessarily ‘one size fits all.’ Just as the disease exists on a spectrum, so do the treatments. The choice of, or intensity of, treatment can often depend on how aggressive the disease is.”

So, in general, groups are great for emotional support, relationships, shared stories, and advice, but rely on medical professional advice when it comes to screening and treatment risks, benefits, and options.

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