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Wednesday, August 22, 2007

The day after my operation, my work in patient advocacy began: A prostate and kidney cancer survivor

Winston Dyer's story:

On May 17, 1995, I underwent a radical prostatectomy to remove my prostate gland at Long Island College Hospital in New York City. The next day, my work in patient advocacy began from my hospital bed with my first radio interview. My friend, who is a host on a Caribbean radio show, called me while I was in the hospital to see how I was doing. While we were on the phone, we decided to go on the air and answer questions from listeners about prostate cancer and promote awareness of the disease. I quickly became the go-to guy for Caribbean men all over the city who are experiencing prostate problems.

Now I'm a 12-year prostate cancer survivor and a six-year kidney cancer survivor. I'm the founder and chairman of Arianna Prostate Cancer Community Outreach.

There isn't a rule book on how to be a patient advocate. Each case is different, so there's no set pattern to follow. One kind of patient advocate is someone who offers assistance to patients to improve their care and quality of life. It means being there for people and supporting them in the best way you can. As you begin this work, you'll learn how to best advocate for others.

Winston's Advice: Your advocacy has to come from your heart.

1. Take advantage of every opportunity. When someone asks you to talk about your experience with cancer, take that chance to raise awareness or help a patient. For instance, three months after my surgery, my urologist, Ivan Grunberger, asked me to speak to a newly diagnosed prostate cancer patient. I visited his house, where I met his wife and answered many questions the couple had about the disease and life after prostate cancer.

2. Make yourself available. Accompany patients to their first doctor visits. As a survivor, you can help explain what the doctor is saying and even ask questions the patient may be afraid to ask.

3. Be patient and understanding. A person who is scared by a recent diagnosis may ask you many questions, at all hours of the night. If possible, you may want to have a separate telephone number for your advocacy work.

4. Help dispel myths. Some patients may have misconceptions about cancer and its treatment. Provide them with information to help separate fact from fiction. Also, encourage participation in clinical trials, which may afford patients greater access to state-of-the-art therapies.

5. Network and make connections. The relationships you build with medical experts will benefit you when you’re helping patients. Get to know the physicians in well-known institutions. Pick their brains and ask them to go over a case history. It's also important to create warm relationships with the staff in a hospital's financial aid office. You’ll need them when representing the poor and uninsured.

6. Get involved in support and advocacy organizations. This is a must for those of us who are interested in advocacy. You'll be a better patient advocate by volunteering in a leadership capacity in a support group or other organization. I worked at CaPCURE for several years, which is an organization that funds prostate cancer research; it's known today as the Prostate Cancer Foundation.

Read another of our cancer survivor stories.

Thanks to our source, Kathy Meade of the Prostate Cancer Advocacy and Action blog.

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