In the Metastatic Breast Cancer (MBC) Community, we gain and lose men and women every day. We know that approximately 116 men and women die in the US every day from MBC, but we don’t know how many are diagnosed since the SEER database doesn’t count us correctly. I’ll share more about this later in the month, but suffice it to say that we have to estimate and extrapolate from the data we do have to be able to correctly and accurately count those of us with MBC.
This means those of us in the MBC community lose friends, people we know and love dearly. every day.
This also means we are constantly “welcoming” new members of our community and this year for BCAM, I’ve partnered with a “new” member of the MBC community, Adiba Barney, who is the brains behind KnowMBC, where she is creating 100 graphics with information about MBC leading up to her birthday. She has also highlighted others living with MBC along the way, including me, so I’ll share some of those stories as well.
Each day in October, I’ll be sharing and commenting on some of the graphics she has created. We don’t have 100 days, so I can’t share all of them, so head on over to her Facebook page and follow her experiences with MBC, her efforts to educate, and be sure to watch out for the publication of her book!
We will start with Day 1 of 100 ….
This may seem like starting with a downer, but bear with me. The whole purpose of this blog series and the graphics that I’m sharing is to educate about how MBC is different from early stage breast cancer. While breast cancer is NOT currently curable (despite some doctors telling early stagers that they are cured), it is not fatal until it has left the breast.
Here’s how my original medical oncologist separated out the severity of the different stages … when I was initially diagnosed with breast cancer, we thought I was Stage II. At that point, he very carefully told me: “You will NOT die of this, you will die of something else, hopefully old age.” When we discovered that I had actually been Stage IV from the beginning, he then said: “Everything has changed, we will stay ahead of the cancer as long as possible, but breast cancer will kill you or the side effects of the medication will.”
That’s the difference between early stage breast cancer and Stage IV.
Whenever you see a notification that someone has died from breast cancer, the actual terminology should be “metastatic breast cancer” or “ramifications of the treatment of metastatic breast cancer.” The media gets this wrong over and over and over.
Why is this important?
Just like we don’t get counted correctly, the public is unaware of how fatal MBC really is, how many people are dying of it every day, and the focus of BCAM needs to be awareness about MBC. Yes, I know it’s important to do self exams and mammograms are good too; yet, none of that can prevent a person from developing MBC and MBC is 100% fatal.
Now you know more about what is different between early stage and metastatic disease in breast cancer.