About a year after Shirley Mertz's breast cancer had spread throughout her spine and into her liver, she was awaiting a scan to gauge how her treatment was working. When told it showed no evidence of disease, she recalls being flabbergasted - as was her doctor.
As she got the good news almost five years ago, Mertz couldn't help but reflect on how people usually think metastatic breast cancer is an automatic death sentence. She now advocates for women to ask questions and seek second opinions after a scary diagnosis.
Women with breast cancer often live in fear of it metastasizing - spreading beyond the breast to distant sites in the body such as the bones or the liver. That happens in about 20 percent to 30 percent of breast cancers. And once it does, the disease is terminal - eventually, not always immediately, as such high-profile women as Maggie Daley, wife of Mayor Richard Daley, and Elizabeth Edwards, wife of former presidential candidate John Edwards, remind the public.
About 200,000 people are living with metastatic breast cancer in the United States, said Dr. William Gradishar, director of breast oncology at the Feinberg School of Medicine at Northwestern University. Though there is no cure and some women die quickly, others are able to maintain a good quality of life for years because of the development of new treatments for certain types of breast cancers.
Mertz, 63, found out her cancer had metastasized in 2003 when she was principal of Fremd High School in Palatine.
"I never expected to dance with this disease," she said, "and so I had plans of growing old and I had plans of holding grandchildren in my arms and helping them grow up."
Always a planner, Mertz opted for a double mastectomy when she received a diagnosis of early-stage breast cancer in 1991. That was a very aggressive option at the time given her stage of disease, but she wanted to ensure that she would be around to raise her sons, then 7 and 12. After the metastasis, she had a hard time even planning vacations because she worried that her health might interfere with the plans.
She has become a leader in the Metastatic Breast Cancer Network and, along with other advocates, successfully lobbied politicians to create a metastatic breast cancer awareness day that was held Oct. 13.
Dealing with metastatic breast cancer can be very isolating and scary, said Musa Mayer, a 20-year breast cancer survivor and advocate who wrote the book "Advanced Breast Cancer: A Guide to Living with Metastatic Disease." Even though her cancer never metastasized, she profiled people with metastatic disease in the mid-1990s because little had been written about such personal experiences.
It's important for newly diagnosed women to know it's natural to be scared and in a state of shock, she said, adding that reaching out to others with the disease can be helpful. More information can be found on her Web site, advancedbc.org.
Metastatic breast cancer is not a single disease. For some women, survival is dependent on how receptive their tumors are to targeted therapies such as anti-estrogen treatments and Herceptin, said Dr. Olufunmilayo Olopade, Mertz's oncologist and director of the Specialized Program of Research Excellence, or SPORE, in breast cancer at the University of Chicago. Targeted treatments inhibit the signals to cancer cells that cause them to divide and grow uncontrollably, according to the National Cancer Institute.
Mertz's first oncologist chose to treat her metastasis as if it had the same molecular characteristics as her primary breast cancer. Seven months later, it was clear that treatment was failing: A scan showed that her cancer had spread further throughout her skeleton and there were suspicious spots in her liver.
She got a second opinion from Olopade, who had the spots in her liver biopsied. Her cancer had mutated to a more aggressive form that happened to be susceptible to Herceptin, a therapeutic antibody that attaches to a specific growth-related receptor found on certain cancer cells and makes it inactive.
Mertz began treatment with Herceptin, as well as an oral chemotherapy agent and a drug to help prevent bone metastases. Ten months later, she went into remission and has shown no signs of cancer on scans for what is nearing five years.
Gradishar said Mertz is part of a very small pool of lucky patients with metastatic breast cancer. "She's somewhat of an outlier," he said.
"My story points to the importance of getting second opinions and being knowledgeable about breast cancer in a sense that you have to ask questions," Mertz said.