Today I posted the following on the ACOR Prostate listserv. It was in response to a series of emails that complained
1- That the organizations representing the prostate cancer community were at odds with each other and that there are too many prostate organizations.
2- That the prostate cancer community is disorganized and unable to “get it together” because unlike breast cancer we do not have clear and agreed upon treatment protocols.
It was the conclusion that these two “problems” are at the root cause of our inability to organize and have our voice heard.
In response I posted the following:
I would like to add a couple of thoughts to this conversation, specific to the issue of why we prostate cancer men can not get unified and become successful.
1- Do not be misguided, the treatment protocols for breast cancer is not any clearer for the women than it is for the men. Just as PSA and DRE screening procedures have been called into question by the research community, so have the mammograms and the cervical cancer Dx tools. If you read carefully there are many, many woman who are probably being over treated just like
there are men who are over treated. There is just as much confusion on what treatment, if any is appropriate for women with breast cancer, so do not blame the lack of standardized treatment protocols.
2- Contrary to an earlier post this week, the breast cancer community, just like the prostate cancer community has many different organizations. Not all of them share all the same goals and many of them, just like the prostate cancer community, struggle with turf wars and other petty issues.
3- What is the difference, they all can come together on the big picture. More importantly, when they do come together they do it in mass with *ACTIVE* participation from the people. Make an announcement that there will be a fund raising run in your local park and I guarantee there will be many individual people who will contact their friends and relatives, get them to come out and pledge money and more important be present at the park.
Because there will be many people in attendance the press will show up and we will read about it in the newspaper and see it on TV.
4- Even more important, when there is a discussion in congress about a women’s cancer issue every member in congress will hear from their constituents, demanding more research dollars or demanding them to support the issue. Prostate cancer issues are lost in congress simply because we do not turn out by even making simple telephone calls, sending emails or snail mail. We are just not present. It is no wonder that for every dollar spent for prostate cancer there are over three dollars spent for breast cancer. We have nobody to blame but ourselves, each of us as individuals.
5- No question, it would be great to see some unity in our organizations, we do have some problems in that area, but there are clear attempts to bridge these issues, but none of that will matter as long as each of us does not take personal and active responsibility.
Survivor- Thyroid, Renal and Recurrent Prostate Cancers
Director of Advocacy and Advanced Prostate Cancer Programs for Malecare
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