These are the words of Ellen Moskowitz, President of the Metastatic Breast Cancer Network. She opened the conference. More than 250 patients and care givers were there. It was extremely emotional for me. I cried through the first hour. Ellen has been living with MBC for 7 years. In a big way, she speaks for me.
"When someone gets a dx of MBC, life totally changes. Unfamiliar territory . . . new vocabulary and rules that seem to be carved in quicksand . . . with lots of questions and few answers. Everything we thought we knew about breast cancer shatters.
. . . In this country [and ours] we seem to have developed a kind of "romanticized" vision of breast cancer . . tied up with a pretty pink bow.
We're told to be a warrior and do battle. We're led to believe that if we have enough happy thoughts, eat enough broccoli, take the right supplements, we will be fine. We are expected to become a better person because we have cancer . . . as if cancer were a growth experience - not a growth.
We are often expected to carry on with life as usual . . . even though our life is now segmented into (weeks) months between treatments and scans and we are always wondering what happens next.
The world of breast cancer is full of people who will happily tell you how they beat the disease . . and people cheer them on and everyone is happy. Well, the fact is that 30% of them will become us . . . the metastatic community. And no one knows why.
. . .
People need to know about us. We need to be seen and we need to be heard. Yes, MBC is a scary disease. . . But here we are . . alive and kicking, maybe not as high as pre-metastases - but there is life after a diagnosis.
Most people only know of those who HAD breast cancer and those who died of breast cancer. What about us who are living with breast cancer? We are here and we want to remain here - we need treatments to extend life. We need researchers to focus on the process of metastases - to learn how to stop that process. A cure is a wonderful thing - but - stable - it's good enough."