Do we need another Gay Men and Prosta... - Prostate Cancer A...
Please select one:
The book that I read was out of date and really didn't address all of the issues involved. Thankfully, I connected to a local gay men's support group and the information that helped me make my decision was far more pertinent and up to date.
Good that you were able to get the information that you needed. Where is the local gay men's support group that you went to?
At the Ed Gould Center in Hollywood. Held by the Benjamin Center out of Santa Monica. The group is very helpful and I have continued attending even though I had SBRT 3 years ago.
I am not gay, so that material does not interest me, but I have gotten some answers to some of my concerns from this site.
Books are NOT a good source of information about prostate cancer, gay or straight. They are outdated by the time they are published. It's important to have the most current knowledge. Walsh's book, published in 2012, is woefully out of date, and reflects his bias towards surgery. Likewise, Scholz's book has a clear bias towards non-surgical therapy. There is very little reliable data that is differential for gay men.
I searched for both books/info plus a gay mens prostate cancer support group. Though I live in the SF Bay Area .... which has more than one cutting edge medical school/research center .... I was not able to find much until someone from the national LGTB Cancer outfit took my inquiry into account, then later contacted me w a referral.
Upon attending the single known group in this large metro area, I discovered that the psychologist facilitator keeps a very tight rein on what is discussed more deeply or expansively and what can be mentioned but very seldom explored. In sum, it turned out that this support group was excellent, but only within its carefully prescribed limits. Members were strongly encouraged to explore and share about engaging with doctors or healthcare staff people in light of their potential treatment options. Outside of that bright light, quality of life issues could be mentioned but never explored or addressed.
For me, this tight focus was not all that helpful. My treatment options were behind me for the time being until something troubling might pop up on my lab test results. So my main concerns were quality of daily life concerns. Living with prostate cancer seems to permeate or affect nearly everything in my particular gay man's life. Alas, no dice.
When I looked for additional info online, I came across some brief videos by gay guys living w prostate cancer, made in Canada, of all things. These were helpful as far as they went. But I still would appreciate some kind of ongoing sharing/support about the daily life walk of having to live with prostate cancer in stage four, metastasized to multiple bone sites.
Not least, side effects from well-known cancer drugs add to the uncertainties that burden me. (Enzalutamide) These setbacks last from a few minutes to hours to a few days in a row, usually when I have planned to do something ordinary and welcome, then discover that I lack the energy or feel so wiped out that I can't do much besides lie down and rest. I admit that my own side effects are far from the dramatic toxicities that some guys get from these meds. I am not faced with toxic brain or toxic muscle wasting syndromes.
Nevertheless. These passing but recurring experiences of floating right out to the edges of within normal limits body-life energy cannot help but suggest to me that I am having some kind of nearly true rehearsal for dying. It gets so weird.
so far as books go, I agree with the prior comments. Books show obvious biases towards one type of treatment or another, and tend to be outdated to some degree by the time they are published. Even when guys living with PCancer are asked to share, nobody bothers to edit us into, say, the different distinguishable stages of PCancer progression/treatment. That simple sorting seems so obvious, one wonders whether the people who would do such books, even care much about what they are doing.
Hi dr danfee
Thanks for your comment. Good that you found referral from the National LGBT Cancer Project. I am the founder of that, almost twelve years ago. Malecare is familiar with the deficits of the San Francisco group. We also recognize the pluses and minuses of "books," which is why we seek opinions from our community . thanks for sharing in that!
