[bejuce]

Just found this thread. WOW! I never asked for cancer but I'm glad mine was HER-2+ just so I could know and be inspired by you. I wish I had more time (I'm at work, last day of the month, etc.) to write an extensive post today but I'll try to do that later. I could go on and on about how these breast cancer organizations upset me. When I was diagnosed and went on disability to focus on getting well, I decided I was going to be an advocate and try to do something about it. I joined a research advocacy group to try to understand the research going on and even went on a panel at the DoD to review breast cancer research grants.

I remember quite a few seminars on research going on how to understand the metastatic process. Unfortunately, there seemed to be many more grants I reviewed on environmental causes of breast cancer or on basic fundamental research to understand cellular pathways. I think the more advocates we have out there on these panels trying to push the research agenda, the more we'll get our message across to the researchers.

I think our advocacy needs to be at the research level (Yes, Nancy, in the lab!) rather than at the Komen level if you know what I mean. I too am angry at the pinketization of breast cancer and agree that there's nothing pink or rosy about it. I also think that the breast cancer community needs to grow up and face issues head on - like, for example, discussing death among us regardless of stage.

I have an example of something that upset me a couple of months ago in the breast cancer community. A local state senator here in CA tried to pass a bill forcing the radiology reports to contain information about breast density and forcing the radiologists to discuss this with the patients. I supported the bill and wrote to my fellow advocates asking them to provide their support, but I was perplexed that a lot of them thought that breast density information shouldn't be something that the government should force the doctors to discuss. I think people put their political agenda (e.g., Komen and the Planned Parenthood issue recently) ahead of the patients.

I recommend you all read the book "How We Do Harm" written by Dr. Otis Brawley of the ACS. He talks about the disparities in cancer care in this country starting his book with a story of a woman in Atlanta who came to the hospital with her breast in a ziploc bag. She had had an auto-mastectomy - basically her breast fell off because her tumor had gotten so large that it cut off all vessels and support for the tissue. She didn't have insurance and was afraid to go to the doctors, having lived with the tumor in her breast for 9 years before her breast fell out. Where is detection for these women? Where is the Komen outreach for these women? These women are still out there, dying of their cancers. We recently saw two brilliant young women - Rachel Moro and Susan Niebur - die of their cancers. They were strong advocates online trying to support more research into metastatic cancers. The money needs to go to the research, not to push political agendas or to try to pinketize the disease.

Gotta go back to work now, but I'll try to join in the discussion later.