Posted by Several years ago, a close cousin of mine died from metastatic breast cancer. It was a tragedy that I couldn’t make sense of at the time–and still can’t.
In this post, we’ll take a look at a few of the facts about metastatic breast cancer and some of the critical research questions that need to be answered so we can better meet the very specific treatment needs of patients with advanced breast cancer.
Wandalyn’s Story
I’m the oldest of four siblings, so I didn’t have an older brother or sister to “look up to” when I was growing up. But I did have a cousin (actually a second cousin) who I admired as a teen. Wandalyn was about ten years older, so when I was in my early teens she was already out in the working world. And she was a reporter for a newspaper–definitely making her a “hero” in my mind at the time!
We lived in different cities though, and there were a number of years in which we were not in close touch. I reconnected with her in the mid-1990s when my husband I decided to participate in a bicycling event known as RAGBRAI–the “Register’s Annual Great Bike Ride Across Iowa.” It turned out that Wandalyn and a group of her friends had already been participating in this ride every year for some years, so she knew all the ropes! We ended up riding with her and her team and had a wonderful time.
I was so pleased that we continued to stay in touch after that. Wandalyn had obtained a master’s degree in counseling in the late 1980’s, and was working as a youth counselor, though she continued to do some writing as well. My cousin had long had a love of horses, and actually owned a horse. I was thrilled to have the chance to go riding with her on a visit to her home in the midwest.
Wandalyn had been diagnosed with breast cancer several years after my own diagnosis in 1993. We rode in Ragbrai with her team again in 1998 and saw them a few years later as well, though we didn’t ride ourselves that year. My cousin seemed to be doing well, but not long after that she learned that the cancer had spread to her brain. Wandalyn died from metastatic breast cancer in 2003.
A Few of the Facts
Metastasis is the spread of cancer to other organs in the body–in the case of breast cancer, these are typically the bones, liver, lungs and brain. Metastatic cancer is not curable and patients are generally in treatment for the rest of their lives with the focus being on controlling the disease and maintaining quality of life. It’s estimated that there are currently 155,000 individuals living with metastatic breast cancer in the United States and that there are about 40,000 deaths from the disease annually.*
Breast cancer metastases to the brain, which Wandalyn was affected by, have actually become more common in recent years as there have been some improvements in systemic breast cancer treatment, including the use of Herceptin (trastuzumab) for HER2-positive breast cancer. The brain is the one organ that systemic treatments generally can’t reach since they tend to be blocked by the so-called “blood-brain barrier”. Brain metastases can occur with any breast cancer subtype, but arise more often in HER2-positive and triple negative breast cancers.
Recent Developments and Critical Research Questions
At the time that my cousin was struggling with brain metastases, over ten years ago, patients like Wandalyn were excluded from most clinical trials. Fortunately, that is beginning to change. “Brain Metastases: Treatments, Emotions and Research Directions” in the Living Beyond Breast Cancer Newsletter, points out that now some trials accept participants diagnosed with brain “mets” and there are trials specifically testing therapies for breast cancer patients with brain mets. Researchers are studying a variety of issues in this area, including how to predict the risk of brain mets, ways to find more effective treatments, and how to make existing breast cancer medicines better able to enter the brain.
In September, new international guidelines for the treatment of advanced breast cancer were published, and included a plea for research to address the treatment needs of a number of critical subsets of patients with advanced breast cancer. The guidelines stressed the urgent need for clinical trials to address issues other than new drug development, including determining the best drugs to use for patients with specific metastatic conditions or treatment responses, as well as selecting individualized treatment based on predictive biomarkers.
When will there be answers?
These are just a few examples of critical research questions in metastatic breast cancer that need to be addressed. Many of these areas of research are complex, requiring teams of researchers from a variety of disciplines as well as innovative clinical trial designs.
How long will it take to get answers to questions like these and more effective, less toxic drugs and treatment regimens for patients? That all depends on the importance that is placed on this research. Focus on the treatment of patients with metastatic breast cancer as a critical research priority is essential if we are going to see real progress made and fewer lives lost to this disease.
*Source: 13 Facts Everyone Should Know about Metastatic Breast Cancer, Metastatic Breast Cancer Network
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Photo Credit: isak55 via Shutterstock
After 20 Years 
Hi Lisa,
Thank you for this terrific piece. I didn’t know that brain metastasis cases have become more common. There is such a need for further research across the board regarding metastatic disease. It defies logic to not earmark more dollars for this kind of research, the kind that kills. Thanks for sharing about your cousin. I’m sorry she died from mbc. It’s so important to talk about stories like hers. There are faces and families behind the numbers. Thanks again for writing this.
Hi Nancy,
Yes, I think for there to be greater progress and fewer lives lost there also needs to be appropriate funding for research on metastatic disease and how to better treat it. With the limited resources currently being applied to metastatic breast cancer research, it seems that correcting that imbalance represents a huge opportunity. Thanks for your comments, and thanks for all your efforts to tell the stories and build awareness where it’s so truly needed.
My sister just died of metastatic breast cancer in the spring. She was 52. It had spread to her brain as well as her bones and lymph nodes after being cancer free for three years. The treatment was like throwing candy at the metastatic disease. I hope there is more research of this disease, as her death was very untimely and difficult. I am also a breast cancer survivor of 6 years of triple negative breast cancer. Thank you for bringing this forward.
Leslie, I am so sorry about your sister. There is such a long way to go. The hoped-for new targeted treatments that will really make a big difference for patients are still few and far between. There needs to be more research focused specifically on better drugs and more effective treatment strategies for all patients with metastatic breast cancer. Thank you for reading and for commenting.
As someone who was only Her2 positive (negative for E/P), I worry a lot about mets to the brain. It’s just another reason I get so frustrated with the early detection/beatable disease nonsense that takes over this month. Sigh.
I hear you, CC. There is much research needed to better understand and treat brain mets as well as dealing with the whole array of issues in metastatic breast cancer. And then there’s prevention of mets, and prevention of breast cancer in the first place. It is indeed frustrating when the talk is just of early detection as if it were “the answer”.