“In June, Prostatepedia is talking about ways in which you as a patient can benefit from and in turn contribute to the prostate cancer community.
What do we mean by that? Chances are, when you were first told that you had prostate cancer, you were afraid. Once that fear passed—if it did—you realized you had some decisions to make. There are a lot of controversies in how the medical profession treats prostate cancer; the path is not always clear. Shared decision-making means that you, as a patient, have to participate and form your own opinion: you can no longer just leave everything up to the discretion of your doctor. This is a good thing, but it does require more effort on your part. Most of you turned to friends and family or began searching online for more information. Some of you joined support groups where you learned from other men with the disease.
The things you learned as you moved through that process are valuable —whether your cancer is under control or not. Your experience will help other men in countless ways.
How can you share that experience with others?
You can join a support group. You can even start a support group if you live in a community without an active group. (Read carefully the conversations with Silicon Valley support group leader Rupen Sheth and Us TOO’s Director of Support Group Services Terri Likowski about how to go about this.) You can even join an online support group if making it out to a monthly in-person meeting isn’t possible.
But what if that type of interaction really doesn’t fit with your personality or lifestyle? You can potentially get involved with clinical research advocacy. We published a conversation with the chair of the Southwest Oncology Group’s patient advocate committee last month, and this month, we feature a conversation with their Patient Advocate Tony Crispino, who works with leaders in prostate cancer research on cutting edge clinical trials.
Or, your cancer itself can contribute to our global prostate cancer community. How? If you’ve got metastatic prostate cancer, your blood or saliva can help researchers build a genomic registry of prostate cancer so that they can learn as much as they can about prostate cancer. Read Dr. Eli Van Allen’s conversation to find out about how to join and what types of strides his Metastatic Prostate Cancer Project has been making in the past year and a half.
The point is that some greater good can come from your prostate cancer journey. You can contribute to our efforts to eradicate this disease: whether it’s in the form of sharing your story with a friend over a cup of coffee or helping researchers decode the information carried within your blood.”