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Malecare: Men Fighting Cancer Together

Through Malecare, men are coming together to fight prostate cancer.
BY Darryl Mitteldorf, LCSW
PUBLISHED March 10, 2016
Amid the national controversy about using the Prostate-Specific Antigen (PSA) blood tests for screening for prostate cancer, stands Malecare. Founded in 1998, Malecare is America’s first, leading and largest men’s cancer support and advocacy national nonprofit organization.

While others debate whether to use the PSA test, we at Malecare challenge our constituents and partners to understand if prostate cancer actually kills people. We’ve come to characterize prostate cancer in two ways. First is the traditional diagnosis where a man has a positive biopsy and then mulls over which, if any, of the available treatments would yield the best opportunity toward living a long life while minimizing the pain caused by treatment-induced urinary incontinence and erectile dysfunction.

Then, there is the other prostate cancer, which we call “advanced.” It is advanced prostate cancer that raises hackles of alarm and fright — and it requires novel and state-of-the-art treatments, some of which have only become available this year. Advanced prostate cancer occurs at a rate of more than double in African-American men than in Caucasian men, though we do not know why. It seems to affect fewer gay men than straight men, though, again, we do not know why. It is advanced prostate cancer that kills. And that makes advanced prostate cancer sufferers a unique grouping of men.

In 2007, Malecare became the very first national nonprofit organization to develop and facilitate a special support and psycho-oncology program entirely focused on men with advanced-stage prostate cancer.

Malecare’s advanced prostate cancer program was developed by psychologists and social workers, almost all of whom were diagnosed with advanced-stage prostate cancer. The program director is diagnosed with five unique cancer types, including advanced prostate cancer. Malecare’s advanced-prostate cancer program provides great information, clinical trial opportunities and peer-to-peer support, along with public policy advocacy and increased research funding. We do this through five realms:

1. Malecare.org's Advanced Prostate Cancer section is the entry point for up-to-date and direction-pointing information for the newly diagnosed or currently confused advanced-stage prostate cancer patients and their caregivers, friends and families.
2. Advancedprostatecancer.net is our vehicle for the latest and most effective treatment opportunities and news, updated almost daily.
3. Malecare.org is also the entry point for our online and in-person support groups. After men complete a very simple sign up, they are good to go. Most men find our online support group for advanced prostate cancer to be one of the most compassionate and uplifting activities that they have ever participated in.
4. Twiceasmany.org addresses the extraordinary death disparity that African-American men face from advanced-stage prostate cancer.
5. Malecare’s patient action leaders fight every day in national and local arenas, to increase research funding, fight "fail first" insurance schemes and force the pharmaceutical industry to make treatments affordable and available to all.  

Malecare is a patient-centered volunteer organization. Everything we do is entirely structured around two constructs: “How can we help” and “How can we do things better?” Malecare is a true organization of men fighting cancer together.
 
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