When I was diagnosed with prostate cancer, I immediately started researching the disease on the web and ordered a half-dozen books about my condition. But I did not seek out a prostate cancer support group. I wish I had.
What could I learn from a bunch of men that I couldn't learn from experts in the field? Lots.
As the date for my radical prostatectomy drew nearer, I began thinking that the voice of experience was as worthwhile as the voice of experts. I frantically called around to several groups in my area.
None of them had a meeting until after my surgery date. I made plans to attend the most convenient one, catheter and all.
Jump ahead six months and I still attend those monthly meetings.
This is a very easy and friendly way to learn about the disease. About a dozen men from the overall group of 80 or so show up every month. Although guys aren't known for opening up about themselves, these prostate survivors bare their souls.
1. Learn about treatments
Just about every month there's a new member who has just received "the word" from his doctor and he's looking for answers. We usually go around the table and tell our individual stories. The guy hears personal anecdotes about all the treatments. I hear about things I never read in the books.
So, you join to learn about treatments. But why keep going month after month?
2. Emotional support
Some guys have to live with prostate cancer. It's too far spread to treat by removing the prostate. These guys come for the emotional support.
3. Recovery issues
All the treatments -- surgery, radiation therapy, hormonal -- have side effects. Impotence and erectile dysfunction are two consequences that can be long-lasting. Hormonal treatment results in a loss of sex drive. Surgery and radiation therapy can also cause incontinence for weeks or months. You learn about what works or doesn't work in these support groups. Guys are comforable talking about these issues that they probably wouldn't broach anywhere else.
4. Information source
One in six men will get prostate cancer. You'll find that other men come to you for information. You owe it to them to be able to give the best advice possible. You'll get that in the support group.
5. You're not alone
I'll be frank. What doctors write in books or on the web won't always apply to you. The biopsy, I was told, is "nothing." Well, it was very uncomforable. My doctor told me that he had guys go "back to work four days" after the surgery. I had no energy and could just walk around the block. Sitting around and shooting the bull with other prostate cancer survivors, you learn that none of them were back to work four days later and one of the good things about treatment was that they wouldn't have to go back for a biopsy.
Where to look
UsToo International Prostate Cancer and Support
Man to Man
Out With Cancer