Prostate Cancer Community Spotlight: Jim Early
Jim Early is a prostate cancer survivor and runs a support group for gay and bisexual prostate cancer patients through the California-based LGBTQ Community Center of The Desert. He talks about the power of support groups, what topics come up most often, and what he wishes others knew about the effects of prostate cancer on the LGBTQ community.
Getting involved with the support group
How long has the group existed, and how did it get started?
The group was originally organized approximately 14 years ago by Evan Van Antwerp, a cancer survivor who reportedly had a difficult journey with his prostate cancer. Later, the group was taken over by Ed Good, himself a prostate cancer patient.
As long as I’m aware of, the group has functioned as a twice-a-month meeting of gay and bisexual men to discuss prostate cancer in general. It also allows them to voice their questions concerning medical issues of the disease itself and the sexual, psychological, financial, and social issues that are a part of dealing with prostate cancer and its treatment.
How did you get involved?
I’m a retired internist who has had prostate cancer for 25 years. At age 49 I was diagnosed with PC and underwent a radical prostatectomy (surgical removal of the prostate). At that time, it was believed to be “cured,” and a schedule of follow-up PSAs (prostate-specific antigen tests) was conducted frequently at first and then yearly.
During these years, I taught a segment on prostate health and disease to medical students, physician assistant students, and nurse practitioner students. After 20 years, my annual testing revealed a slowly rising PSA that indicated the disease was still present and slowly growing. It was then that I heard about the PCSG (prostate cancer support group) and was asked by one of the members, Gene Otto, to take on the job of facilitating the group after the death of Mr. Good.
Prostate cancer and the LGBTQ community
Many medical resources and even support groups focus on the experiences of straight men. How do you think this affects gay, bisexual, and transgender patients?
A lot of good technical information can be gained from sources that are not specifically geared toward the LGBTQ community. However, many if not most hospital or organizational support groups are made up of men and their wives/partners.
The positive is the involvement of significant others, which may be less common in our support group. The negative – and I’ve witnessed it firsthand – is that men are often reticent to voice their sexual concerns in the presence of their wives or other females. This can be true in the doctor's office, too. I have had straight men ask if our group is an appropriate place for them to get some “straight answers” to their more intimate or explicit questions.
What's talked about
What are some of the most common topics that come up in the support group?
First of all, there are lots of questions about the early stages of discovery and about chances for recovery. One of the most important things the group seems to accomplish is reducing the fear and anxiety of newly diagnosed members. Another huge area of discussion is the best initial treatment method. The members of the group have taken every imaginable approach to their cancer, from watchful waiting to radical prostatectomy with/without radiation.
Other common topics revolve around adverse outcomes. Erectile dysfunction and urinary incontinence are frequent topics, and the discussion around methods for improving ED with pumps, shots, pills, and better foreplay are discussed with little hesitancy to share success and failure stories. The topic of mechanical support, such as bladder sphincter cuffs, penile implants, etc., is also frequently brought up. An additional topic is the effect of hormone treatment and chemotherapy on libido and social life.
Beyond all this is the discussion of the psychological effects of the disease, the social implications, and the alienation many men feel when they can’t perform to their old standards. Members share their fears and success when it comes to enhancing communication with partners, managing the dating scene, and improving personal feelings of wellness in the face of the disease. There are other issues that transgender women and intersex patients must have that could and should be included in our discussions. I could go on forever, but suffice it to say that the discussions are wonderfully open and sharing.
How has the pandemic affected the support group and the ability to connect?
Like everything else in society, the group has struggled with surviving the pandemic. At first, we simply stopped meeting, but the Center encouraged us to start using Zoom, and for more than a year we have had reasonably good attendance at the Zoom meetings.
We kept to the same twice-a-month schedule and felt it was a preferable alternative to not meeting at all. More recently, we have been meeting both in person and by Zoom. This allows members from further away to participate. And, during the summers in Palm Springs, many members migrate to cooler climes and can still participate.
What do you wish others understood about the effects of prostate cancer on gay, bisexual, and transgender people?
That is a hard one. I guess the importance of feeling sexual and the expectation of sexual activity into the senior years makes prostate cancer treatment success even more important for our community. The LGBTQ community is very open about sex and all men, certainly gay men, talk a lot about the physical aspects of sex and socializing involving sex. One of the aims of the group is to encourage its members to fully engage socially and not to be afraid to examine their fears and not let the disease destroy their social and sexual lives.
How can we all help increase awareness and address the needs of the LGBTQ community?
Any and all positive press is good. We depend a lot on word of mouth, but articles in respected publications such as the New York Times have increased interest. Health information outlets in hospitals and in areas where the LGBTQ community might see it is also important. We should let our providers know about this resource and ask them to share with patients who they think might benefit from the group. Having the resources of the Center and its newsletter has been beyond valuable for the viability of our group!
Ideally, prostate support groups can help educate and empower us all to be bolder and more open in informing providers and the public regarding the needs of gay, bisexual, transgender, and intersex people with prostate cancer.
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