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How to Self-Advocate for Advanced Prostate Cancer

Reviewed by Brunilda Nazario, MD on October 27, 2020

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."

Continued

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
  • Cancer.net
  • Prostate Cancer Foundation
  • National Cancer Institute
  • Urology Care Foundation
  • National Comprehensive Cancer Network

Ask Questions

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.

Continued

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?

Continued

"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

Your Emotional Well-BeingLiving with advanced prostate cancer can lead to self-doubt about your role in your family and the world. But surround yourself with family, friends, and the community, and it can make a big difference in your happiness.170

[MUSIC PLAYING]

KIMBERLY CURSEEN: It's

important to pay attention

to your quality of life

if you have an advanced cancer

is because you are still alive.

And there's value in that life.

And there can be joy

in that life.



And as treatments are becoming

better and better,

advanced cancer doesn't mean

what it meant before.

So we may be talking

about a significant amount

of time.

And that time should be

as joyful and fulfilling as

possible.



Some of the thoughts

and feelings

I think any patient

with advanced cancer

will have is, how long will I

live?

And the second is, what's going

to be the quality of life

as my illness progresses?



There's a loss of many things.

You know, our society values

productivity.

So in advanced prostate cancer

for many men,

they have hormonal therapy,

which is--

or have had hormone therapy,

which is wonderful.

Um, but it does decrease

virility and strength.

So spending a-- a good deal

of time of trying to reframe,

what is their role

or actual value in the family?



Also, as somebody becomes more

ill with any illness, um,

especially an advanced prostate

cancer, your loved ones

or the people who love you start

to become caregivers.

And that can cause people

to feel very

insecure and separated, um,

for their--

from their-- from their loved

ones and changes the nature

of the relationship.



The successes that I see

are when men realize

that their actual value

to the family

was more than what they

provided, um, financially

or more what they could

do physically but them

as a person

and realize how valued they are

in the family unit,

whether or not they can do

these traditional things,

that they are valued

within themselves.



I think it's incredibly

important, um, to have

community.

Though the feelings that you

feel are isolating, but they're

not isolated.

And being in community,

whether you talk or engage,

um, with--

with those people can be helpful

because they actually

understand.



So, I would ask your cancer

centers about, what do you have

for supportive oncology,

if they have outpatient

palliative care teams, doctors

and nurses, social workers,

and spiritual health clinicians,

and sometimes nutritionists

and other-- other forms

of therapy,

being proactive about asking

for that.

Um, you may not necessarily

understand what you need,

but you probably need something

that they have to provide.

And there's never going to be

a time in the cancer journey

that your quality of life, um,

is unimportant or should be--

should be sacrificed.

Kimberly Curseen, MD<br>Director, Supportive and Palliative Care<br>Winship Cancer Institute, Emory University/delivery/aws/57/0e/570e7789-e5ab-382b-80a6-43680717033b/091e9c5e81fac47f_expert-voice-advanced-prostate-cancer-emotional-wellbeing_,4500k,2500k,1000k,750k,400k,.mp408/21/2020 12:00:0018001200photo of couple talking to doctor/webmd/consumer_assets/site_images/article_thumbnails/video/advanced_prostate_cancer_emotional_wellbeing_video/1800x1200_advanced_prostate_cancer_emotional_wellbeing_video.jpg091e9c5e81fac47f

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."

Continued

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.

WebMD Feature

Sources

SOURCES:

Ramdev Konijeti, MD, director, genitourinary cancer program, Scripps MD Anderson Cancer Center.

Murray Wadsworth, Livingston, TX.

Cancer.Net: "Taking Charge of Your Care."

American Cancer Society: "Cancer Information on the Internet."

National Coalition for Cancer Survivorship: "Self Advocacy."

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