We all must become a self-advocate if we are to survive and prosper with advanced prostate cancer. Self-advocacy gives us a positive experience that provides a true sense of control in a time when we experience only uncertainty.
Self-advocacy can be very simple. It can be as simple as asking more questions at your doctor’s appointment.
Do not confuse self-advocacy as becoming responsible for your cancer care alone, it’s sharing responsibility with you medical experts. You still need and rely on your health care team.
Self-advocacy should become an ongoing process, ideally starting at the time of diagnosis and continuing to follow-up care after treatment. In the real world most of us are not cable of being self-advocates when we are first diagnosed, so our advocacy should start as of today. It is never too late to take up the mantle of sharing responsibility and becoming a self-advocate. Ask questions of your doctor and nurse.
How can you become a self-advocate or improve your advocacy role? Here are some suggestions:
• Study and learn as much as possible about your cancer using reliable websites (this site and Malecare.com are excellent starting points). The National Cancer Institute (NCI), also provides excellent starting points. Speak to your doctor and their nurses and learn as much as possible from them. Most major cancer centers and hospitals have free libraries that are full of books and pamphlets that are available to borrow or keep. Do not be afraid to discuss this information with your doctor or nurse. Again, ask questions.
• Ask about and then take advantage of all the services offered at your doctor’s office, hospital, or clinic. Many facilities offer services such as counseling, support groups (go to the Malecare web site www.malecare.com and search for local support groups), nutritional counseling, and fitness or movement classes. Many facilities also are staffed with social workers and nurses as part of the health-care team who can provide additional psychological and social support services.
• Take advantage of the experience of other prostate cancer survivors. Meet other survivors at support groups and learn from their experiences living with prostate cancer. Share their experiences.
• Always, always seek a second opinion about your diagnosis or treatment plan. Doctors do sometimes make errors or are not always aware of the latest “cutting edge” treatments. A second opinion will help you feel more confident about any choices you make about your treatment.
• Do not be afraid to ask for help with nonmedical issues, such as transportation, finances, insurance, and childcare.
• Be political. Prostate cancer is not recognized as the killer it is. Unless we teach people, share our stories and fears and let our legislators know that we want more funds for research and support services we will be destined to remain in the dark ages of prostate cancer care and research.
Joel T Nowak, MA, MSW