I've written before about the Army of Women posting a research study for young women who were diagnosed with breast cancer. You had to have been under 40 and pre-menopausal. This was one of the first studies that I have ever qualified for, and something I really wanted to participate in.
I was especially interested as there had been no breast cancer (or cancer of any type) in my family up until me, and then my sister who is 7 years my senior was diagnosed with it about 5 years after I was. I want new information to come out and hopefully treatments/preventative measures so that my two nieces and my own daughter don't have to go through what I have.
I also thought it would be good as my mother and father are both living and both are in their 80s. The combination of my sister and my parents just might give some insight into why this happened.
I filled out the permission forms and the history and had blood drawn and sent off to Washington University in St. Louis. It was not without some trepidation that I filled those papers out. You see, there isn't anything to protect me or my daughter from having insurance companies in the future deny her treatment based on genetic testing information which might show her to have some sort of gene abnormality which would make her at risk for getting this disease.
I find this a travesty. I didn't like it, and I know I am putting her future at risk, but I feel that I'm putting her future at risk if I don't step up to the plate and participate. We should be protected. No one should have this being held over their head, particularly if one is being penalized for doing something for the greater good.
In addition, even with a positive genetic factor, it doesn't mean that a person who has a gene abnormality which is connected with cancer has a 100% chance of developing the disease. For some unknown reason, sometimes these "triggers" are not tripped. But I certainly want to put a bullet in this disease. I guess I'm going to have to write my congressmen, but I feel like it won't go any where.