A Choice: Hold On To Fear Or Be Inspired By It!

By Shirley Mertz

Shirley Mertz spoke about breast cancer at the White House Champions of Change, September 2011. (Pictured left to right, NBCC advocates Amy Bonoff, Joy Simha, Shirley Mertz, Pat Haugen, Wanda Lucas)

October is again upon us. It is the month of what I call pink haze. Countless pink ribbons and pink tee shirts will be worn by thousands of women across the country.  The media will offer up stories of individuals who celebrate the end of their treatment for breast cancer and share how long it has been since their diagnosis. All will embrace their triumphant return to life as normal. Some will even speak proudly about how breast cancer motivated them to live differently after their journey.

For a woman like me, the story of breast cancer has a different outcome. For the past nine years, I have been receiving treatment every three weeks for advanced or metastatic breast cancer that spread to my skeleton and into my liver. Receiving a targeted treatment and chemotherapy, I went into remission seven years ago. I am very blessed. But, I am not cured. Patients like me hope that treatment will keep the cancer from growing or prevent the cancer from destroying a vital organ like the liver, lungs or brain that will end our life. When a treatment stops working (its called treatment resistance), we hope that there is another treatment that will work. That is not always the case. In fact, 39,520 women and 450 men died of advanced breast cancer in 2011.

In spite of 155,000 people currently living with metastatic breast cancer in the United States, our voices are essentially ignored and excluded in breast cancer conversations during October. Why? I offer two reasons. 

First, our story is not a pretty pink story with a happy, triumphant ending.  We cannot say we are finally through with treatments. Nor can we announce, “I beat breast cancer!” 

Second, the stories of metastatic breast cancer patients fly in the face of those early stage breast cancer patients who want to feel cured after going through treatment. Anxiety and fear about cancer coming back is very common among patients who receive a breast cancer diagnosis. I know because I held that fear for 12 years after being diagnosed with early breast cancer in 1991. Though I received regular checkups during those years, I became one of the 30 percent of early breast cancer patients whose breast cancer comes back as invasive or metastatic cancer even after receiving proper treatment for early stage disease.

Why is this still happening?  More importantly, why are women allowing this to happen?

The truth of the matter is that in spite of millions of dollars of research, researchers do not have good answers that can change patient outcomes. Scientists have not been able to explain what triggers cancer cells to leave the breast, hide for a long time and then emerge in another site in the body—a process called metastasis. Unraveling this deadly process of metastasis involves doing difficult scientific research. Truthfully, there are very few scientists who study metastasis. And, the current system of how scientists progress in their career does not encourage young scientists to tackle really hard questions that might take a long time. To get ahead in their careers, scientists must do research that gives them publishable data in a relatively short time. 

An even larger challenge to finding the causes of metastasis is that funding mechanisms do not give priority to that question. We research all kinds of issues related to breast cancer, but only 6 percent of breast cancer research dollars awarded through the National Cancer Institute are devoted to the study of metastasis—the kind of cancer that kills. The research devoted to metastasis through the Department of Defense Breast Cancer Research Program (DOD BCRP) is greater—25 percent—but most other research funding sources are focused in other areas. People support breast cancer research without asking “What kind of research?” And, “Will this research prevent deaths?” Instead, messages in October make us believe that finding breast cancer early means you will be cured (it does not) and that every kind of research contributes to a cure (it does not).

To once and for all untie the pink ribbon, I ask survivors of early stage breast cancer to embrace their fear and be inspired by it. 

What we do not recognize we cannot change. And, unless we choose to select an empowered response to our fear, the fear will always be there. And, the deaths from breast cancer will continue.

We all should be angry that breast cancer continues to rob us of the lives of our mothers, sisters, daughters, grandmothers and friends before they have lived a normal life span. If we all can embrace our fears and collectively demand to know the causes of metastasis, we can end the dying. We must demand a change in the focus of research so that no one has to face the prospect of getting metastatic breast cancer or dying from metastatic breast cancer. Early stage breast cancer survivors could finally remove the fear from their mind that their breast cancer will come back and threaten their future. 

So how can we get the research we need? All women and those who love them should sign the petition to support the National Breast Cancer Coalition’s Breast Cancer Deadline 2020®, which calls upon the President to use available resources to support strategic research that will identify the causes of metastasis and how that process can be prevented.

Embrace your fears and be inspired by the fear to join an effort that I am confident will finally end deaths from breast cancer.

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