I guess I have more of a comment than a question. I’m 67, a widower and have been recently diagnosed with prostate cancer. I never was very adventuresome when it came to sex. In fact before my wife died two years ago I never had sex with any other woman. I never gave prostate cancer a thought, never gave my prostate a thought either. Now I’m mad as hell that I didn’t. You see when I started to go to a prostate cancer support group I discovered I could have monitored myself better with a simple self-examination. Why don’t doctors tell us about this? Women are supposed to examine their breasts why don’t men examine their prostate? It’s so easy actually and yet it’s this big secret. Why don’t people talk about this? It makes me so mad because it could have made a big difference in my own life. Do you know about this self-examination Dr Dick? If you do why don’t you tell other people about this? I think it would help a lot if you could get the word out on this. Now that’s all I have to say. Thank you.
No, thank you Gordon. Thank you for sharing your concern with me…with us.
I’ve been an active proponent of prostate self-exam for many years. Let me explain. My career as a therapist began in San Francisco in 1981. As you may recall, that was precisely the same year a mysterious new disease began showing up among gay men. Back then it was being called gay cancer, but soon it would have another name — HIV/AIDS.
Not surprisingly, my private practice focused down almost exclusively to working with sick and dying people. Luckily, I discovered that I was well suited for the job and I liked it very much. So much so that in the mid-90’s I founded a nonprofit organization called, PARADIGM, Enhancing Life Near Death. It was an outreach and resource for terminally ill, chronically ill, elder and dying people. This was brilliant cutting-edge work and I learned so much from the people I was working with. One of the things that struck me most was that regardless of the disease — cancer, HIV, MS, you name it, or aging process for that matter — there was always a woeful lack of information about regaining a sense of sexual-self post diagnosis, or sexual wellbeing for seniors in general.
This was such an important topic for me that I decided to include a chapter on sex and intimacy concerns for sick, elder, and dying people in my book, The Amateur’s Guide To Death And Dying. I am proud to say that it is one of the only resources of its kind available in print.
I recall one PARADIGM group in particular, there was a man much, like you, Gordon, who had prostate cancer. And, like you, he was mad as hell with the indifference of the medical industry toward prostate self-exam. One day during a group session, John was railing against his doctors and cancer associations for their lack of interest in promoting prostate self-awareness. He pointed to the success of the cultural campaign to get women to do breast self-exams. Like you, Gordon, he couldn’t understand why there wasn’t a similar campaign for men.
Another group member, Marie, a senior woman in her 70’s and a breast cancer survivor, helped put things in perspective. She reminded us that breast self-awareness in our culture is a relatively new phenomenon. Her mother, aunt, sister, and a niece all died of breast cancer before the self-exam campaign began in earnest. Clare went on to say that it was only through the hard work of individuals and grassroots organizations that actively campaigned for breast self-exams that things began to change. Eventually, this movement changed the cultural mindset. Clare said that it was these individuals and grassroots organizations that helped all of us — medical industry, the cancer lobby and women in general — overcome the denial, shame and embarrassment that was associated with women touching themselves, even to save their lives.
This is an indication of just how ingrained the sex-negativity and body-negativity runs in this culture.
I continued to work with sick and dying people here in Seattle. I had a brief gig at a local cancer center where I developed an NIH (National Institute of Health) funded program for women newly diagnosed with ovarian cancer. I was also working with a group of women with breast cancer and another group of men with prostate cancer. Again I realized that just about every therapeutic intervention I encountered — government funded or foundation funded — was woefully lacking in any clear and unambiguous information about sexual health and wellbeing and intimacy issues.
To remedy this, I began planning a video series for people experiencing life threatening and/or disfiguring illnesses. Videos that would help them address reintegrating sex and intimacy post diagnosis. One of the first videos was going to be Public Service Announcement showing men how to do a prostate self-exam. By the way, this particular film was to be dedicated to my friend John, the guy I mentioned earlier. He died shortly after the PARADIGM group he was in ended. But he died self-aware. He was militant to the end about the pressing need for prostate awareness among men.
Once again the stumbling block I encountered was funding. My grant writing efforts turned up nothing. I did get a whole lot of, “what a fine idea, Richard. Good luck with that…” brush-off letters though. No foundation would be caught dead funding sexually overt pattern films, even ones with the laudable intent of assisting people with the very information they needed most.
I’m sorry to have been so long-winded in my reply, Gordon. I just wanted you to know that many have preceded you with outrage at the conspiracy of silence regarding prostate self-exam. Let’s face it; our society is so ass-phobic that we’d rather see men die than offer them simple instructions how to finger their butt, find their prostate and keep tabs on their prostate health.
If we want this to change we all need to speak out…as well as stick a finger in our ass.
Keep up the fight, Gordon! And please, stay in touch.