More than pink

mbc awareness day tealEvery October everyone goes pink crazy. Pink shirts, pink jewelry, pink pink everywhere. The focus on breast cancer is on cure. Race for a cure.

Until September 25, 2018 I thought the same thing. When I worked with patients diagnosed with breast cancer, I always believed there was a cure. That there would be a remission. I didn’t realize there was something called metastatic breast cancer (also known as stage IV breast cancer), and that it was incurable. I didn’t realize that for them the fight would never be won.

It’s amazing how much the words ‘you have metastatic breast cancer’ changes your life. I went from someone who took minimal medication and saw a doctor once every year or two to taking handfuls of medicine and seeing a doctor monthly if not more. And I learned that there would never be an end in sight. In the days that followed I researched everything I could about the disease I was now fighting.

Breast cancer is more than pink. It is more than a campaign or some fancy things you can buy. It is a lifelong battle that never ends. It is more than a pink for us.

People (yes, men can be diagnosed with metastatic breast cancer too) don’t die from breast cancer that remains in the breast. They die once the cancer spreads to other organs, the brain, or bones.

we need a cure campaign

The statistics are staggering. Approximately 155,000 people in the United States have metastatic breast cancer (MBC), however these are only estimates because often due to the other locations it has spread to it might be considered another form of cancer. Up to 10% of patients will receive the initial diagnosis of MBC (which is what happened to me) and in 70% of these cases the cancer will spread to the bones. As many as 30% of initially diagnosed with early stage breast cancer will later be diagnosed with MBC. The median rate of survival of MBC is only three years after diagnosis and the five year survival rate is only 22%. It claims the lives of 110 people each day and approximately 40,000 will die from it each year. MBC is the leading cause of cancer death in women under the age of 50 and is the second leading cause of cancer death in women of all ages. While death rates have declined in most other forms of cancer, it has not changed in 40 years for those battling MBC. As shocking as these statistics are, only 2% of breast cancer research is devoted to MBC.

The ribbon above is the METAvivor Metastatic Breast Cancer Awareness Ribbon.

“Green represents the annual return of spring after winter and thus immortality. Teal represents healing and spirituality. Together we chose these to represent metastasis. The pink ribbon on top signifies that our metastasis began with breast cancer.”

i am the elephant
Pink is not a cure. Metastatic breast cancer is treatable but no longer curable. Treatment is lifelong and consists of preventing the spread of the disease to additional sites, managing symptoms and improving the overall quality of life so patients can be productive and comfortable for as long as possible.

Research where your dollars are spent. Is the fundraiser or organization raising funds for more fundraising, or is the money actually going to additional research? Is it an organization that focuses solely on early stage breast cancer, or do they allocate funds to metastatic breast cancer as well? Think before you pink.


Note: The statistics I quoted are from the Metastatic Breast Cancer Alliance, and the elephant in my header and the awareness ribbon are from METAvivor.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 2, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)

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