William Goeren is the Director ofClinical Programs for CancerCare, a New York-based organization that offers counseling, support groups, education, and financial assistance to cancer patients and caregivers. Prostatepedia spoke with him about common issues gay men with prostate cancer face.
Why did you become a social worker?
Mr. William Goeren: I became a social worker in the mid-1980s in response to the AIDS crisis. This was not the direction I was headed, but the AIDS crisis had so shifted my outlook on life and altered my priorities that I needed to figure out a new direction, a new version of myself.
Like many young men in their early twenties, I had come to New York with dreams of a fulfilling acting career. In the midst of that, I had a shift in priorities. It was a rather dramatic shift. I was just trying to come to grips with grief, loss, death, and dying. And that’s when I attended a five-day workshop called “Life, Death, and Transition” presented by Elisabeth Kübler-Ross in upstate New York. Every day we had workshops, presentations, and individual work in her intervention model designed to help people understand death. It was very powerful to be in her presence. I knew who she was prior to going and was rather in awe of her.
After that workshop and others with a number of other high-profile people of that era, a hospice nurse strongly stated I would make a wonderful social worker. I applied to school, and my path very much changed at that point. I felt very passionate about my new direction.
How did you start at CancerCare and what do you do there?
Mr. Goeren: Earlier in my career, a gay male client in his early 30s who had a rare salivary gland cancer came in to where I was working and said that he was scarred after surgery and radiation. He said: “As a gay man with cancer, there are no services for me at all. If I had HIV, I would have services from A to Z.”
That comment stuck with me, so when I got to CancerCare in 2008, I started working on an LGBT cancer program here. In 2011, I collaborated with a New York organization called Services & Advocacy for GLBT Elders (SAGE), which provides psychosocial and concrete services for gay and lesbian elders. We launched a face-to-face support group for older gay men with cancer. That was the first actual service that we were able to launch. Though there’s a wide range of cancers in the group, the majority of the men have prostate cancer.
We’ve made attempts to launch other services; some are more successful than others. We started a group for gay women with cancer here in New York, but it was difficult to populate and maintain. We launched some online support group services, which are very robust and are for our national LGBT clients. There are currently two online groups for the LGBT community, one for LGBT cancer caregivers and the other for LGBT persons with cancer. Eventually, I would like to launch an online support group for the LGBT community who are bereaved because of cancer. We have a few publications, and I’ve done some talks at some of the national oncology social work conferences. In general, CancerCare now has 42 online support groups, which are social worker-facilitated, password-protected posting boards. These are not live groups but very much function like a face-to-face group.
What are the particular concerns or challenges facing gay men with prostate cancer?
Mr. Goeren: There is some research going on that is limited and minimal.
For example, David Latini, Daniela Wittmann, and Thomas Blank are doing research focusing on issues in the LGBT community and cancer and, in certain studies, research specifically related to gay men who have prostate cancer. They are interested in how gay men, differing from their heterosexual counterparts, react to being diagnosed; the impact of the diagnosis and treatment on their sense of self, emotional wellbeing, and quality of life; as well as how the medical community could be more sensitive and better trained in LGBT and cancer issues.
Research has shown that many gay men feel great shame, stigma, and embarrassment triggered by their emotional reactions and the physical changes related to prostate cancer and its treatment. This shame and stigma touches upon, for many, established internalized homophobia, previous experiences of discrimination and harassment, history of coping with, and in some cases, living with HIV disease, and negative experiences coming out.
Many men experience urinary and bowel incontinence, altered sexual function, and penile shortening (an underreported and under-discussed side effect). All of these impact a sense of masculine identity for men in general. For many gay men, prostate cancer can have a compelling and compromising impact on one’s sense of self within an already disenfranchised and diverse community, his self-esteem, and his ability to relate intimately to other gay men. Gay men report losses associated with prostate cancer for both the man with cancer and his partner. These losses include spontaneity, intimacy, and normalcy in sexually relating, which can lead to fears of rejection, emotional withdrawal, depression, and anxiety.
In addition, HIV affects many gay men who have cancer, whether they live with HIV, have survived multiple HIV-related losses, or are coping with issues of safer sex and determining their risk of exposure and infection. Another immense challenge for a gay man with prostate cancer is finding an oncologist who is educated in the complexly sensitive and layered issues that confront any gay man with prostate cancer. It is essential that an oncologist provide a comfortable, secure, and safe atmosphere, in which a gay man can disclose and discuss his sexual orientation, lifestyle, and activities.