[Carolyns]

I was finally diagnosed at age 33 (the first time after changing doctors to get a prescription for a mamograhm). I had stage I and learned that my gyno of 14 years said I had an obsessive fear of breast cancer. I found the lump and he pretended to follow me for a year.

The second time I was also stage I and 43 years old. That time I did not feel a lump.

At age 49 I was diagnosed with mets after finding the lumps. Both my oncologist at the time and surgeon blew me off. My OB/GYN ordered the ultra-sound that diagnosed me.

I am puzzled by this message. When I went to their conference in DC I met several leaders of grass roots efforts in the African American community. I learned that these women had a much greater risk of death from breast cancer. The reason as they explained it to me was due to a lack of awareness and the fact that most African American women were diagnosed much later and many at Stage III.

None of this ads up. I agree that more money needs to be spent on finding a cure but this message seems to translate into "awareness in not helpful in fighting this disease" and that translation is maddening.

Joe,
How can we get the Her2 Support group on that board? They need people like you and Christine. I was very saddened by their focus and lack support for metastatic women. I learned a great deal but it just seems like this is an extremely powerful and effective lobbing group with a narrow scope. They need a broader perspective. That said, I greatly appreciate the work that they do even if most of it will not benifit me or others with mets. They help keep breast cancer in the forefront of the leaders in DC and fight for funding from the defense department for research.

Love, Hope, Peace, Carolyn