When I was diagnosed with a prostate cancer recurrence I was at the young age of 55 years. I live in New York City where there are a number of face-to-face support groups for prostate cancer, but none had any other men with advanced disease.
At a support group run by Malecare I finally lost my temper. All my anger at being diagnosed and feeling like I might have been the only young man with advanced prostate cancer in New York City welled up in me and burst out in an uncontrollable way.
I inappropriately expressed my growing anger and frustration to the group leader. Instead of reacting in a defensive manner this individual leaned back in his chair, smiled and challenged me. He simply responded to me by saying, “I agree, it must be hard being where you are and not having any resources to get you through this diagnosis”. He went on and said, “So, why don’t you do something about it?”
My immediate response was to let a number of additional four letter words roll out of my mouth, I turned and stomped out of the room feeling even more angry.
You see, he was partially correct and partially wrong, I did have many resources, especially my loving wife Wendy and the rest of my family, but I did not have any others who were like me, younger and with metastatic prostate cancer.
I returned home feeling even angrier than I had prior to this encounter. However, I thought about this challenge and after a few days decided that perhaps I needed to take it up. I met with Darryl, the Executive Director of Malecare, and agreed to join with Malecare and create a program specifically for men, like me, men with advanced prostate cancer.
Since I had this awakening I have worked diligently to create the first and still only advanced prostate cancer program for the support, education, and political advancement of men with advanced prostate cancer. To date, I have made a robust program that boasts of many patient oriented programs. My concern is patients and caregivers; you and I! I am not concerned about doctors, administrators, scientists; our programs are all patient oriented and patient driven.
Our programs which include this online support group has grown to over 890 members with a current monthly average of 292 messages each and every month. I write a blog (this blog) about advanced prostate cancer, which receives 14,000, hits a day and I have written a complete guide to advanced and recurrent prostate cancer, which is available on the web without any charge. All you need to do is download it! Then there are the free teleconferences and educationally oriented videos as well as the many individual and personal connection that I have been able to facilitate. (go to Malecare.org)
We have many other programs for men diagnosed with cancer including a very active political action arm which has been involved in obtaining early access to what was then not yet FDA approved treatments (like Zytiga and Xofigo).
We have done all of this plus many other things for men with advanced prostate cancer and their families. We always do everything without any financial charge. All of our programs are open to anyone, so we reach out and touch people across the world.
None of us at Malecare have a salary, we are ALL volunteers, and so every dollar we receive goes back to you, men with advanced prostate cancer and their families.
As we are now in the holiday gifting season I must join the cry from many other worthy causes and ask that this year you include Malecare in you donations. We struggle to continue to be able to offer our services, so I ask your help. If Malecare has provided you with help, if it has changed the direction of your treatment or your life, please remember us now.
I need to pay enormous computer server bills, journal subscriptions and conference costs to be sure that the information I offer is cutting edge and correct. I need to cover my many costs to go to Washington to make sure that our voice is heard, to protect the research funding for the Department of Defense Prostate Cancer Program as well as prostate cancer funding at the National Institute of Health (NIH).
I have taken on these tasks with a passion only a fellow survivor could have and like everyone else I am a volunteer, but we still have expenses which we can no longer fund out of our own pockets. Allow me to continue our work.
Please go to http://malecare.org/donate/ to insure that Malecare and all of our programs will continue.
Thank you for allowing me to serve your needs, but don’t forget to make sure that we will be able to continue to provide our services as well as expand them without any cost.
Joel T Nowak, M.A., M.S.W.