BY KATHY LATOUR | DECEMBER 13, 2013
A number of the presentations at this year's San Antonio Breast Cancer Symposium addressed metastatic breast cancer – when the disease has left the breast and moved to other parts of the body.
What used to be an immediate death sentence has been redefined in the past decade as a potentially chronic disease – depending on a number of factors, the estrogen status, the HER2 status, where the cancer traveled and how treatable it is.
Today an estimated 30 percent of women diagnosed with early-stage breast cancer will have recurrence – anywhere from a few months to years. And those who are fighting for more research dollars and more respect for this community quickly point out that, while some like to encourage women to see themselves as long-term survivors, the majority still die within a few years of their cancer becoming metastatic.
Breast cancer most often spreads to the liver, lung, bones or in some instances, to the brain. Of the women diagnosed each year, around 6 percent are already metastatic at diagnosis, and 40,000 are expected to die each year. Susan Axler is a long-term metastatic survivor who is attending the San Antonio Breast Cancer Symposium as an advocate through the Alamo Breast Cancer Foundation in San Antonio. Her goal, she says, is to learn as much as possible about advanced disease for the women she helps and herself. Diagnosed with DCIS in 1988 when she was 41, Axler says she researched for weeks and finally decided on a lumpectomy and radiation and no chemotherapy. She healed well and went back to her job as an elementary school reading teacher. Four years later she noticed her breast had hardened and her radiologist found a localized recurrence. She had a mastectomy and chemotherapy and once again moved on.
"You can't second guess yourself," Susan says. "There is no right or wrong, and you will make yourself crazy."
In 2000 Susan felt a knot under her arm and, once again, learned the cancer was back, this time in the bone of her sternum and her vertebra. Again she underwent chemo with different drugs. In the the work-up for this new recurrence she found out her tumor, which she had been told was ER-negative was actually "highly" ER-positive. The oncologist put her on an aromatase inhibitor that she has taken since then and her tumors have been stable.
Unfortunately, she has struggled with an ongoing hematologic disorder, which she feels has to be connected to her cancer. In 2012, her tumor markers began to rise, and her oncologist switched her to
"My response has been to get involved in everything I can related to metastatic disease," she says. She took part in the American Cancer Society's national development panel for Reach to Recovery for advanced and recurrent cancer as well as serving on Department of Defense and Susan G. Komen grant review panels.
She is also active with the Cancer Support Community in Philadelphia, contributing to their newly created "Frankly Speaking about Metastatic Breast." The book provides information about every aspect of metastatic disease for the patient and caregiver and is available free of charge.
The Cancer Support Community is one of 15 founding advocacy organizations that came together this fall to form the Metastatic Breast Cancer Alliance whose goal is to improve the lives of and outcomes for those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding specifically focused on metastasis that has the potential to extend life, enhance quality of life and ultimately to cure.
At present the Alliance is exploring individual programming to identify overlap and gaps in care.
Axler says her treatment, like many of those with metastatic, has become art as well as science. She would also like some kind of time frame for her life, since she has been reminded by friends how quickly the disease can become deadly.
"I want a time frame," Axler says. "But I won't get it. "RELATED POSTS