What Dean and I went through was frightening and isolating and confusing. How is it, these days, getting diagnosed and dealing with prostate cancer treatment, especially with libido-draining hormone ablation treatments? It’s instructive to ask what wasn’t there way back in 2002, when Dean heard the words “You have prostate cancer,” and I caught my breath.
*ListServs hadn’t arrived yet–There were probably chatrooms; but not very many people were chatting about treatment or about the aftermath– E.D. or libido or continence–either on or off the internet. The fear and social stigma having, these days, abated, Us Too, just to cite one organization, maintains web addresses specific to many topics and populations: seeds (seedpod), cryo (iceballs), prostate cancer and intimacy (pcai), to name a few. For a more complete list, see my website (www.victoriahallerman.com).
*Inclusive–Male/Female–Support Groups never felt like a comfortable option to us. Man to Man and Us Too existed, but I don’t think the outreach was sufficient to encourage either of us to come to a chapter meeting. Why? Because everything surrounding prostate cancer was so hush-hush; not that men–and urologists–are entirely “out” about it today, but the comfort level is sufficient to draw more people to meetings and the dialogue is generally freer in these meetings than it was even five years ago.
*To expand upon that point, the dialogue about prostate cancer and treatment wasn’t as brave or open as it is now. Dana Jennings in the New York Times spares none of his readers the details of treatment and post-treatment life, both in his blog and on the page. Why is that? Well, for one thing, it’s okay for men to discuss E.D., incontinence, even libido in public without feeling emasculated. In fact, the word “emasculated” is offensive and totally obsolete. Eight years ago, if I was lucky enough to stumble on a discussion of male sexuality, it focused on E.D., entirely ignoring libido. The two were somehow one and the same, even to doctors, who saw things purely in terms of mechanics. Men who have undergone prostatectomy often emerge with E.D., but with intact libidos, whereas radiation and/or hormone ablation patients may be challenged both mechanically and mentally. This is now recognized.
*The dialogue is also more inclusive: wives and partners are considered part of the treatment population, not just bystanders or caregivers. It was maddening, when Dean went through treatment, to be told I should take care of myself, “for his sake…” that is, so I could be a more effective and supportive caregiver. I think there might have been one organization for partners, but now there are many (Yahoo maintains one, The New Prostate Cancer Infolink hosts several different forums for women on various topics, and of course so does Us Too).
Where does this leave us? A recent visit to Amazon.com yielded 7,135 book titles for breast cancer and 3,567 for prostate cancer. Prostate cancer has a long way to go before it becomes as well-organized well-funded and well-supported as its sister disease, but we’re on our way.