I am a firm believer in survivors helping other men deal with their prostate cancer, however there are areas of caution.
What treatment should I move on to; hormone blockade; Keto or chemotherapy. Should I participate in a clinical trial? What’s best for me?
It seems that there is a lot of advice out there, some of it good, but some faulty. Everyone has an opinion. Sometimes there is so much advise it can just make your head spin.
Bad advice, or just too much of it, can compound the trauma we experience. Friends, relatives and other survivors are important for support, but when these untrained people act as cancer coaches, they can sway you to make poor decisions about your care.
Survivors, whose opinions are highly valued by other patients, know a lot about cancer, but can do harm if they project their own experiences onto you. Men are different from each other and so is our disease, so solutions also need to be different. Uneducated survivors also may be out of touch with changes in the field.
What’s the solution?
There are now advocacy groups and hospitals that are using “professional” coaches — trained volunteers or paid workers who can objectively help new patients navigate the maze of information and options.
The American Cancer Society started a patient navigator program a few years ago that now operates in 87 locations and is planning to expand. The National Breast Cancer Coalition also trains coaches, and big treatment hospitals like the University of Texas’ M.D. Anderson Cancer Center are increasingly using them for breast, prostate, lung and other types of cancer.
In the breast cancer world these coaches volunteer in hospitals and support groups where they staff hotlines, meet with new patients and teach other coaches what they learned. Demand for this training is so great that the Alamo Breast Cancer Foundation gets grants from the Avon Foundation and nine drug companies to subsidize their training.
Untrained survivors are usually too free about giving advice. Instead, they should be helping men to think out loud.
Whether amateur or professional, a good cancer coach should offer these things:
An ear to listen, a shoulder to cry on, a hand to hold.
Reliable information or help getting it, and only if the patient wants it.
A willingness to help other men discover what is best for them, rather than to validate the coach’s own cancer battle and choices.
Good coaches can ask questions, gather information and take notes for the shell-shocked patient to use later. It is bad when the coach interferes with the patient’s decision making.
Always be aware of people who tell you your experience is going to be just like theirs. Your disease maybe different and your treatment will be treatment. You need to be aware of all the options and discuss them completely before you make any decisions.
Joel T Nowak MA, MSW
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