Editor’s Note: In honor of Metastatic Breast Cancer Awareness Day, we are re-posting Eve Mart's piece on metastatic breast cancer to share her perspective as a patient advocate. Please share to help spread awareness.
During the past 30 years, there has been a cultural shift in breast cancer advocacy and awareness activities. An abundance of education efforts, as well as information and news coverage, have made breast cancer a familiar disease. There have also been significant strides made in early detection, research, treatment and patient empowerment during the same time span, all giving us much to celebrate. However, for late stage or metastatic breast cancer, the narrative is markedly different. According to a number of sources (The Journal of Cancer Research, American Cancer Society and BreastCancer.org), metastatic disease – the most advanced stage of breast cancer in which cancer has spread beyond the breast to other organs in the body – remains an incurable condition and is the second leading cause of cancer death among women today.
Metastatic breast cancer makes my heart ache. My mom has metastatic breast cancer to the lung. My very good friend, Tracey, is 46 years young and has metastatic breast cancer to the liver. A fellow Ford Warrior in Pink Miami Model of Courage just lost her battle with metastatic breast cancer recently. She, too, was 46 years young. The list of friends battling metastatic breast cancer is growing, and it’s maddening and saddening all at the same time.
According to the Metastatic Breast Cancer Network, “an estimated 150,000-200,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.” I’m going to go out on a limb and guess that number is underreported and/or on the rise. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life, which is debatable if you ask my friends and my mom. Moreover, contrary to mainstream opinion, early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10, or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms. My mom was 27 years cancer free, until she no longer was… and now it’s in her lung.
We all believe "early detection is key" and I do believe one’s odds of survivorship are better if breast cancer is caught sooner rather than later. But the reality is that "20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer," as stated by the Metastatic Breast Cancer Network. That’s a big number. Those are my friends, my mom and possibly even me. Who knows? There are no guarantees in life, but I feel like more awareness, research, and attention should be steered towards the awareness of, treatment and, dare I say it, cure for metastatic breast cancer.
There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease are unique. This statement translates into “We don’t know.” Doctors simply may not know how a person with metastatic breast cancer is going to respond to treatment, if that person will respond to treatment, which treatment might work… for now. It’s one giant crapshoot. So while, 'Metastatic breast cancer is not an automatic death sentence. Most people will ultimately die of their disease, though some will live for many years,' I don’t care how you slice it, that’s a really tough pill to swallow at any age or stage in life.
Pfizer conducted a 2014 study and it was reported that, "Women with metastatic disease feel isolated, alone and ignored and they demand more attention." According to the study conducted by Pzifer regarding the public perception of metastatic breast cancer, "More than 60% say they know little to nothing about metastatic breast cancer." Furthermore, a staggering "72% believe that breast cancer in the advanced stages is curable if diagnosed early."
I don’t know what the answer is, but it’s clear that there are misconceptions in society around all stages of breast cancer, and it seems that the deepest misunderstandings center around late stage disease. More efforts need to be made to demystify metastatic breast cancer and elevate awareness to incite change. It’s been done successfully before with a movement towards breast cancer advocacy and early stage detection, now we need to put the spotlight on metastatic breast cancer because our loved ones are dying and it’s heart-breaking.
References
- Metastatic Breast Cancer Network. Available at http://www.mbcn.org/. [Accessed October 13, 2016].
- "Breast Cancer: A Story Half Told" initiative. Available at http://www.storyhalftold.com/. [Accessed October 13, 2016].
