Stage IV Needs More: Life with Metastatic Breast Cancer Conference
I attended the 8th National Conference on Life with Metastatic Breast Cancer in Chapel Hill, North Carolina, September 20-21, 2014. This sounds like it could have been a depressing topic. In too many minds, Stage IV cancer equals death. But the opening meeting quickly focused on “realistic hope.” Shirley Mertz, President of the Metastatic Breast Cancer Network, who has had metastatic breast cancer since 2003, opened the meeting.
When she asked everyone present who is living with metastatic breast cancer (MBC) to stand, people looked around and no longer felt isolated as they viewed the crowd of women and men standing with them. Ms. Mertz asked those who had lived with MBC more than a year to continue standing, then five years and ten years. Seeing the more than half a dozen people who were still standing made everyone realize that MBC is not the instant death sentence that often comes to mind when people hear that diagnosis.
Ms. Mertz and Marc Hurlbert, Executive Director of the Avon Breast Cancer Crusade, set the tone for the meeting with the slogan “Stage IV Needs More” as they laid out the facts and numbers. About 150,000 people in the United States have Stage IV breast cancer. The 40,000 annual breast cancer deaths are from metastatic disease. About 20-30% of the patients who are diagnosed with an early stage breast cancer will recur at Stage IV--often years later. Yet only about 12% of breast cancer research studies focus on metastatic breast cancer. Because of the way statistics are counted, we don’t even have good figures on how many people who thought they were cured of breast cancer recur. Rosy five-year survival rates do not tell the whole story because so many people who have a recurrence have it after that magic five year point.
The conference had a good variety of large group and break-out sessions led by medical researchers along with presentations by people living with MBC. A video by Catherine O’Brien called “Dumb Stuff People Say to People with Metastatic Breast Cancer” drew laughs of recognition. Other speakers’ accounts of their personal journeys brought standing ovations. Cathy Spencer’s poem “Dear Body” was particularly touching.
I learned bunches of facts from the medical professionals leading many of the sessions. Dr. Hyman Muss showed a slide I found particularly interesting. The slide showed that in one research study on a particular drug, women whose metastases were stable for 24 or more weeks had a survival rate comparable to women who had a complete or partial response to the trial drug. He said the goal for treating MBC patients is to find a treatment that offers minimal side effects while controlling the growth of the cancer. This was a revelation to me because I am accustomed to thinking of the purpose of treatment as killing cancer.
Other sessions highlighted the progress that is being made in treatments to keep Stage IV patients alive longer. Advances in radiation techniques now make it possible to access small tumors previously difficult to reach. A new understanding of the many subtypes of breast cancer and the molecular pathways that allow cancer cells to grow out of control is leading to a whole array of new drugs such as kinase inhibitors and drugs that stimulate the immune system.
Twenty topics were offered in the breakout sessions. Some sessions focused on coping strategies for caretakers or parents of young children. Others gave information about nutrition and complementary therapies.
All of the sessions allowed time for questions. Often the speaker had an answer, but even more often the answer was “we don’t know yet.” If there was one theme in all of the talks on a wide variety of topics, it was that we need more research to answer the questions about what makes cancer metastasize and what are the best ways to control it. Speaker after speaker talked about how budget cuts have impacted their ability to find answers to our questions. They urged people to contact their congress members and urge them to fund research adequately.
Stage IV Needs More!