Dipping my toes in the water

What I didn’t realize until I was diagnosed with breast cancer:

1. In the 1940’s women had a 1 in 20 chance of developing breast cancer over the course of their lifetime. In 1970 it had increased to 1 in 10. Today it is 1 in 8.  I assumed with all of the advances in treatment since my grandmother was diagnosed and had a radical mastectomy in the 1960s that my generation was at least doing as well as hers. I was mistaken.

2. The mean survival rate for women with metastatic breast cancer (stage IV – cancer which has spread to other areas of the body) is 3 years 3 months. With all of the pink products and literally billions of dollars raised in the last 30 years for breast cancer charities I assumed that we had made progress yet that number has barely budged. We’ve gained months, not years. I had no idea.

3. Women diagnosed with early stage breast cancer like me have a 30% chance of developing metastatic breast cancer and eventually dying of or with the disease. I assumed early detection saved lives, and in some cases it does but not nearly as often as we have been lead to believe. I was misled.

4. There is no cure for stage IV metastatic breast cancer. I knew that was a scary diagnosis to have but I guess I assumed they could do something to cure it for at least some people? After all the pink fundraising touting the goal of a cure? With a metastatic breast cancer diagnosis comes literally lifelong treatment designed to give you as much time as possible. I can’t imagine wrapping my brain around that diagnosis yet I know so many people who have had to and are living life to the fullest while they can. They deserve better. I was ignorant.

5. Only 7% of research dollars are devoted to metastatic disease. Metastatic breast cancer is the only type that kills. If you know someone who died from breast cancer, they had metastatic disease. I assumed with all of the slogans and banners that a lot of the money raised to “fight breast cancer” and “find a cure” was being devoted to saving lives. I was…. well, you know what they say about assumptions…..

We need a major shift in how we focus our resources. We need more transparency in all areas including where our donation dollars go, what we have and have not achieved in our search for a cure and who really benefits from pinktober. We need to take off our pink blinders and get to work because change will not happen unless we all work together. I want better for all of those already affected. I want better for my children. I want my daughter’s generation to look back and say “Wow, can you imagine what they went through?” because none of them have ever had breast cancer. I will be posting information, links, pictures – basically anything I find educational, helpful or occasionally even just funny to lighten the mood throughout October. I hope you will join me in this journey. When we know better, we do better. Let’s learn together.