THE BLOG

Finding Support

01/31/2013 06:38 pm ET | Updated Feb 02, 2016

I met my partner, Ron, in Detroit in 1973. We lived together, moved across the country and shared everything, including a simultaneous double diagnosis of prostate cancer in 2003.

Meeting just a few years after Stonewall, we did not feel safe sharing our secret relationship with anyone. We daily feared being caught. Five years later, we moved to Los Angeles where we could live a more open life, but still we shied away from gay causes or politics. By nature, we were the kind of people who relied exclusively on each other. Only after we were overwhelmed from our mutual struggle with cancer did I turn to the gay community for support. I then searched for gay role models with cancer and for support groups. I found neither.

Ron and I were diagnosed at the same time but the course of treatment for our prostate cancers was radically different. I had my prostate removed and needed no follow up treatment.

However, Ron's cancer was far more aggressive and his treatment options did not include surgery. He endured chemical castration, testosterone deprivation, and 45 rounds of Taxotere, a chemotherapy drug that is also used for breast cancer treatment. My life partner of 33 years, Ron Winokur, died in 2006. He was 58 years old; I was 56. I looked for prostate cancer support groups for gay men while Ron was still alive, then for support groups for gay men who had lost their partners. There were none. I felt alone.

I was reminded of my loss when I recently learned that Huell Howser, California's TV version of Will Rogers and a gay man, died of prostate cancer. He was a great story teller and I wish he had taken the opportunity to tell this last story before he passed. There is a growing list of public figures who presented themselves as role models when they were diagnosed with prostate cancer. This list includes Senator Bob Dole, Robert De Niro, Warren Buffet, General Colin Powell, and California's Governor Brown, to name a few.

It would have been an invaluable message if the much loved Huell Howser went public with a simple message encouraging gay men to get regular PSA testing. If caught early, prostate cancer does not have to be a terminal disease. Early detection can often lead to a complete cure, but early detection is the key. And too many gay men are not getting tested. According to the CDC, 28,088 American men die annually of prostate cancer. Statistically, one in six men will be diagnosed in their life time. And even more dramatic, one in five men of African descent will be diagnosed in their life time. How many of these are gay? We don't know.

Why didn't Huell Howser go public with his prostate cancer diagnosis? He never publically addressed being gay either, but he never kept it a secret from the gay community of Los Angeles. Did he fear a negative response from the viewing public, his sponsors, friends and doctors? Was he cared for by a life partner and did they find support for the toll that his treatment (or lack of treatment, we don't really know) and death took on their relationship? Was he brave enough to ask his doctors about the impact of cancer treatment on his sexuality? If he did ask, did the doctor know the answer?

Rejection, discrimination and stigma are the near-universal triumvirate for gay men, lesbians, bisexuals and transgender people. Many LGBT people build their lives on an early foundation of rejection and it can take its toll later in life in mistrust/avoidance of the healthcare system, lack of openness with one's doctor's and poor skills at taking care of our bodies. As a group, we smoke at approximately twice the national rate and we are far more likely to use and abuse alcohol. Both of these increase our prostate cancer risk. Add to all this the dramatically lower rate of health insurance coverage in this population and it makes me wonder if Howser received regular PSA tests. He was known as an intensely private person and we will never know.

I am grateful today for organizations like the National LGBT Cancer Network, founded just one year after Ron's death. Their mission includes educating the LGBT community about our increased cancer risks and the importance of screening and early detection. They also created a national directory of LGBT-welcoming free/low cost cancer screening facilities that is available on their website. They want to keep expanding the database until every LGBT person is in driving/subway distance of one. I am still waiting, though, for a prominent and beloved gay man to speak out, encouraging us all to get an annual PSA test, to take good care of our bodies.

I have come a long hard way from that closeted gay man who met his partner in Detroit. I didn't understand for many years that we have to all work together to make a change in the lives of the next generation of gay men. My own personal experiences have opened my eyes to help do my share. In May, 2011, I started the LA Gay Men's Prostate Cancer Support Group, followed by the Gay Men's Sexual Dysfunction Support Group. I started both of these groups from ground zero by financing them myself and by volunteering my time in building and promoting them. All my work is dedicated to my late life partner, Ron Winokur. I know if he were alive he would be the first to help with my effort to stamp out prostate cancer by offering this one simple message: an annual PSA tests is a simple thing to do. It may even save your life. If you would like to help me in my mission to develop more gay men's support groups around the country please contact my organization at GMSHF@yahoo.com or the National LGBT Cancer Network at www.cancer-network.org

This post was written with the help of Liz Margolies, LCSW & Executive Director of the National LGBT Cancer Network.