Karen Durham never expected to be speaking on behalf of the Metastatic Breast Cancer Alliance. After successful treatment for her diagnosis of stage 2 breast cancer with mastectomy, chemotherapy and hormone therapy in 1989, she went on with her life.
She and her husband both worked for the Federal Aviation Administration and on weekends the couple could be found touring on their Honda Gold Wing motorcycle.
Then in 2009 Karen found that the pain in her shoulder was a tumor – a breast cancer tumor. She had metastatic breast cancer – 19 years after her first diagnosis. For treatment Durham chose a clinical trial for a drug no longer in development, but offered to her on a continuing basis by the pharmaceutical company as long as it works.
She became involved in the Komen Foundation, located in Dallas, a half hour from her East Texas home. There she educated herself on the issues facing metastatic patients, speaking for the foundation and the Metastatic Breast Cancer Alliance of which Komen was one of the founding members. Today there are more than 20 member organizations with the alliance whose goals are knowledge, understanding and progress.
“I am the only one of the 120 on the trial who has not progressed,” Durham said. “And I am very grateful to the pharmaceutical company for continuing to give me the drug. My doctor didn’t even have to ask them. They offered.”
Durham has been involved in the Metastatic Breast Cancer Alliance since its inception, supporting its goals of increasing awareness and education about the disease as well as advancing policy and strategic coordination of research funding specifically focused on metastatic disease to “extend life, enhance the quality of life and ultimately to cure.”
She is also a 2014 Alamo Breast Cancer Foundation advocate at San Antonio Breast Cancer Symposium (SABCS), an annual meeting that brings doctors and advocates from around the world. Since 1997 the foundation has brought advocates from patient organizations across the country (and now the world) to the SABCS. Close to 500 have been chosen from more than 700 applications. They spend five days learning about the latest in research and treatment so they can return to their organizations to educate and empower their members. Of the 28 women advocates chosen to attend this year, 10 come from foreign countries.
A Status Report
At the opening dinner, the Alamo advocates heard from Dr. Susan Love, chief visionary officer of the Dr. Susan Love Breast Cancer Research Foundation; Fran Visco, founder of the National Breast Cancer Coalition (NBCC); and Shirley Mertz, president of the Metastatic Breast Cancer Alliance.
Mertz spoke about findings from the Metastatic Breast Cancer Landscape Analysis released by the alliance in October of this year. In addition to the need for more research funds, Mertz, who has metastatic disease herself, said there is a need for more awareness about the disease and the women who live with it as well as how it differs from early stage breast cancer. The report also looked at how little research funding goes toward combatting metastatic breast cancer and the lack of accurate statistics on incidence, prevalence and survival as well as the difficulty in finding information and support services that are essential for those living with MBC.
Durham has lived with many of the issues addressed in the report, which she says has identified challenges faced by the metastatic community.
“The support group at the local hospital was not welcoming, and the social worker didn’t feel that there were enough of us to justify another group,” she said. Today Durham finds support online and with her involvement at Komen. And, she says, from her husband, who has missed only one of the 180 appointments she has had since the diagnosis. Her physical health is manageable, she says.
“I was at a meeting when a physician talked about managing the side effects of the drugs and it hit me that I can’t remember a time when I didn’t have a headache, painful joints and a queasy stomach.”
Mertz pointed out that there are an estimated 155,000 women and men with metastatic disease at any given moment and 99 percent will die of metastasis, a number close to 40,000 a year.
There is a need for more research funds directed only at metastatic disease, Durham says, adding that she sees metastatic disease as separate from early-stage disease.
“I will never get to ring the bell of hope at the end of treatment,” she says. “I will be on treatment the rest of my life. Sure I have limitations I didn’t have six years ago, but I have a full life.”
Facing the Reality
Musa Mayer, a founder of the Alliance, says the celebration of survivorship and the energy given to destigmatize breast cancer does not reflect the experience of those with metastatic disease. And for all the excitement of those living many years with metastatic disease, the average life expectancy is still three to four years.
Mayer, who wrote a memoir of her own breast cancer journey, became interested in the metastatic community while researching other breast cancer issues and was perhaps the first to publish the voices of these women and men long ignored by the regular community.
“I wrote a guide where I had accumulated interviews with some 35 women and a few men living with metastatic disease that looked at their isolation and how they were not welcomed in the regular breast cancer community.” Mayer also taught workshops on writing, which allowed her inside the experience of these women and men.
Mayer says there is reason for excitement with the new approaches from immunologists who see the immune system as incredibly wise. “The goal now is to figure out how to mobilize the immune system,” she says.
This takes money and collaboration, and Mayer adds her frustration at the incremental pace of development of drugs that might make a difference.
“It’s a paradigm shift,” she says, adding that the pace of change remains discouraging for the women and men with metastatic disease who are waiting.
For more information and to read the report of the alliance go to mbcalliance.org
, or bcmets.org