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by Ian Mair   |   April 5, 2018

Prostate Cancer is Weird

Prostate cancer is weird. There seems to be two disparate camps of people in this world: those whose lives have been touched in some fashion by prostate cancer and those who have not. It’s often very hard to get someone with absolutely no exposure to prostate cancer to even give it a second thought. Anyone whose life has been touched by it is usually part of a receptive audience. From an advocacy standpoint, they just are not the people you need to reach. They’re already in the choir and don’t need preaching.

How then does the advocate reach those ignorant of the disease? It isn’t easy to cut through the excuses. ‘I’m too busy to get tested.’ ‘It’s an old man’s disease.’ ‘I don’t have any family history.’ ‘I feel fine.’ ‘I eat right and take care of myself.’ ‘I don’t trust doctors.’ ‘I don’t want anyone sticking their finger up my …’ You get the picture. If you actively advocate prostate cancer awareness, you have already heard them.

Why should we care that others get tested if they seem completely aloof to the notion? It’s because we have already been touched by it and wouldn’t wish it on anyone. We wouldn’t wish the worry on family, friends, or coworkers. We wouldn’t wish the pain, the incontinence, the embarrassment, or loss of dignity. We wouldn’t wish the entire intrusion on life, forcing everything else on hold, while you struggle to live or care for someone who is struggling to do so.

I had the honor of spending a weekend in late February with a group of survivors and their caregivers in Washington, D.C. as prostate cancer awareness Champions under the aegis of ZERO – The End of Prostate Cancer in their bid to end the disease. Educationally, we were treated to the latest in research and were able to glimpse some of the treatments and diagnostic tools available now or on the immediate horizon. But more important than that were the survivor and caregiver stories. Breakout sessions in small groups allowed me to hear perspectives different from my own, folks from all walks of life. There were wives who had lost spouses and children who had lost fathers, each with their own personal relationship to this dastardly disease. Refuting the notion that it is an ‘old man’s disease,’ is Trevor, a robust thirteen-year-old, who was diagnosed with prostate cancer at age nine. Lest ye not worry, he appears to be doing well.

Perhaps what affected me most is a statistical injustice to African-American men. Not only are they 2.5x more likely to develop prostate cancer, but the strains that affect them can be far more deadly. It is for this reason that advocacy outreach to this group is so important. It is a cruel fact of life that there is nothing fair about prostate cancer. I attended a breakout session on roadblocks to PSA testing in African-American communities and learned firsthand that the state of health care in America and its unequal availability to those needing it plays a role. There is one school of thought that if a black man doesn’t have access to health care and treatment for prostate cancer, then he would rather not even know he has it. There can also be a deep-seated bias against the medical community and suspicion in general of medical research born of unethical treatment in the Tuskegee syphilis experiments.

Prostate cancer is called ‘the silent killer.’ If you wait for symptoms, you are already late. It isn’t that you won’t survive, but your chance for unpleasant residual after effects increases. There is a simple, painless, inexpensive blood test that can predict the presence of cancer; or at least the need to consult a urologist. Your baseline number, before any prostate-related illness exists, is just that. It is yours. It is important to know this number as well as you know your phone number. It is a measure of your prostate specific antigen level, your PSA, and it is specific to you. It should be a routine part of annual testing and any sudden increase over the previous year needs to be evaluated by a urologist.

Prostate cancer research does not come cheap. A high-risk, high-reward approach can result in tremendous strides instead of incremental changes. Veterans and active duty service members are at higher risk for prostate cancer – both because of the aging veteran population and exposure to Agent Orange, and so this important research funding is allocated through the Department of Defense’s Congressionally Directed Medical Research Programs through a program called the Prostate Cancer Research Program. This funding goes directly to researchers in high-risk, high-reward studies.

It is comforting to have organizations like ZERO guiding the actions of fellow survivors, volunteers, and caregivers in the fight to end this killer. The effort of our ZERO ‘army of volunteers’ coordinated assault on the offices of our nation’s representatives in Washington, D.C. was successful in that research funding was allocated and approved in the amount of $100 million. We can now each get back to our own specific relationship with this disease, be it ongoing treatment and support, dealing with its effects, or advocacy for awareness because it has become a part of each of our lives.

We need to figure out how to get through to the others for whom there is neither urgency nor interest. We need to create importance around something they consider so unimportant in their lives. I wish the very best to all who joined the effort in Washington and thank each of you for your work. There is still a lot more to do, so keep your bags packed by the door and I hope to see you to continue the fight next year!