Most men are uncomfortable talking openly about sensitive issues—painful emotional stuff like their fear of incontinence, or of never having another erection—and many feel that support groups, where such things are talked about, are not for them. However, my own experience in the medical minefield of prostate cancer taught me that finding the right support group is one of the best things you can do for yourself following a prostate cancer diagnosis.
A good support group provides you with an opportunity to discover how other men have resolved the challenges and coped with fears that you are currently facing—men who have actually lived through surgery, radiation, cryotherapy or hormone blockade. What’s more, your local support group is often your best resource for recommendations and referrals, for learning the names of the most experienced (and best liked) prostate specialists in your area.
Often you will find that the volunteer leaders of support groups are unique individuals who, while waging their own battles against prostate cancer, have dedicated countless hours to research, and who willingly share their experiences with those just beginning the journey. Some groups have expert speakers—doctors, social workers, psychologists specializing in intimacy issues that impact both men and their spouses—who can offer helpful information and can answer questions from first hand experiences that relate directly to your problems and concerns.
However, not all support groups are created equal. A group’s effectiveness depends a great deal on its members. Are they mostly upbeat and willing to share their experiences? Do they mainly discuss possible solutions to problems? Do you feel that you can learn something from them? Or do the members mostly complain? Is there an atmosphere of doom-and-gloom? You don’t want to leave feeling more depressed than when you went into the meeting!
Another thing to keep in mind is that every support groups has members in different stages of the disease, ranging from localized and curable, to very advanced. If you have never been to a support group before, you could become frightened or depressed by what you hear. If this is the case, either you are in the wrong group, or you may be simply be more comfortable with an internet site like Prostate Cancer Blue Community website http://www.prcibc.org/ that connects you with other men in your same category of prostate cancer.
In most states you can find support groups that provide treatment advice as well as emotional support. The American Cancer Society’s Man to Man chapters are nationwide; most of them welcome spouses, a few prefer that women and men meet separately. To locate the Man to Man chapter nearest you, contact the American Cancer Society at 800-227-2345. You can also go to http://www.cancer.org/ for their online prostate cancer support group. Other excellent resources include Male Care, “Men fighting prostate cancer together” (http://www.malecare.com/), Michael Milken’s Prostate Cancer Foundation (http://www.pcf.org/) and USTOO International (http://www.ustoo.org/).
So even if you are one of those guys who look down on support groups as crutches for sissies, I suggest that you at least give your local group a try. At the very least, you will be able to query a number of men about their experiences with doctors in your community. At best you may develop, as I did, very special prostate cancer friendships with men you can call at any time of the day or night, men who understand what you’re going through. And if you’re lucky, you might run across a uniquely knowledgeable group leader who can give you exactly the information you need to make the right treatment decision.
No doubt about it. There is strength in numbers.