Metastatic Breast Cancer Deserves Our Attention 365 Days a Year
We asked our community of women and men living with metastatic breast cancer (MBC; also called stage IV or advanced breast cancer) to share what they wish people knew about their disease.
“Here I am dealing with the biggest challenge of my life and very few understand it or see it.”
First, our community wants you to know the facts:
- MBC is breast cancer that has spread to other parts of the body such as to the bones, liver, brain, or lungs.
- An estimated 155,000 people in the United States are living with MBC.
- One in 3 women diagnosed with early-stage breast cancer will go on to eventually be diagnosed with MBC.
- Approximately 6-10% of new breast cancer cases are stage IV, or metastatic, from initial diagnosis, sometimes called “de novo” metastatic disease (de novo means “from the beginning”).
- MBC accounts for approximately 40,000 deaths in the U.S. every year.
“The biggest thing I wish others understood is that MBC is the only type of breast cancer that people die from, and they still die in alarming numbers. Due to pink washing, a surprising number of people believe that breast cancer is very curable and you have no worries if you get regular mammograms and do self-exams. They are stunned to find out that about 40,000 still die annually.”
Second, our community wants you to know the realities of living with MBC:
- A person with MBC will always be in and out of treatment. There is no cure.
“There is no 'beating' it no matter what a 'warrior' I am or hard I 'battle.'”
“Many of my colleagues assume that because I appear and act well, I am cured. I feel the need to educate them that I will never be cured, my disease can only be managed.”
- Each person responds uniquely to treatments, so there are no definitive prognostic statistics. A person can live for years with MBC.
“The important thing I've learned is that MBC isn't necessarily the immediate death sentence I first thought it was.”
- Each new test or scan leaves a person with MBC waiting and wondering. Progression is always possible.
“I wish people would remember that there is still no cure and that MBC'ers are never done with treatment, even if scans look good, progression is always possible.”
- The mental challenge of living with MBC is as difficult as the physical challenges at times.
“The worry, fear, confusion, pressure to research, figure out finances, try and prepare your family and still squeeze in some living with happiness can be extremely overwhelming.”
Finally, our community wants you to know that more attention needs to be given to metastatic breast cancer awareness, education, and research:
- Only 7% of the funds raised for breast cancer research go to MBC research.
“The pink ribbon campaign, while valiant in its efforts, neglects to recognize those of us who won't be cured. In many ways, we are the invisible victims of breast cancer.”
“…. [What w]e desperately need is a dead serious focus on MBC and a lot more funding toward MBC research.”
“I wish there could be more education on what it's like to have and cope with MBC. I don't think we 'fit' into the typical awareness campaign that is popular in the media.”
This video by Laura Odom of the Rise Up Campaign tells the story:
Learn more about metastatic breast cancer.
Connect with others living with MBC.
Read the stories of people with living with MBC.
Send your stories of living with MBC to firstname.lastname@example.org.
Visit MBC Alliance to learn about others advocating for MBC awareness, education, and research.