Advanced Breast Cancer Awareness
Too many women are living with advanced/metastatic/Stage IV (all those terms mean the same thing) breast cancer. The good news is that many of these women live pretty normal lives for many years, but the really bad news is that there is not yet a cure. When I first began to do this work, there was exactly one treatment for metastatic breast cancer, adriamycin, and when it stopped working, there was nothing else to offer. Doctors describe advanced breast cancer as treatable, not curable, and often call it a chronic disease.
The situation has improved greatly, but the plan is still serial treatments for the rest of one's life. This means that any one treatment (hormonal therapy or chemotherapy) is given for as long as it works--can be a few months or many years--and then, when it is no longer helpful, a change is made to another treatment. Every treatment sooner or later stops being effective as the cancer cells figure out how to be resistant to it. I know one woman who has been on weekly Taxol for 11 years with absolutely no progression in her metastatic cancer. It is always distressing when a treatment must be changed, and women are always quite sad and scared for a while. Usually, however, a rhythm develops, and life goes on as before. There are big differences in the side effect profiles of different treatments, so it is especially difficult to transition from, say, a hormonal therapy which has only meant taking a daily pill to a chemotherapy agent that requires weekly IV infusions and may cause hair loss.
During the pink wave of October, it is especially difficult for women living with advanced breast cancer. All the attention and hype seems to be focused on early detection and "cures" and little mention that it does not always work out that well. Some women are diagnosed with Stage IV breast cancer at the time of their first diagnosis. More often, a woman is treated for Stage I, II, or III breast cancer and, at some point, the cancer returns elsewhere in her body. The treatment, as described above, is the same in either situation.
This is a wonderful essay from The Huffington Post by Dr. Elaine Schattner. I am giving you a quote and then a link. I encourage you to read the whole thing:
Tired of seeing pink? You're not alone, says Dr. Barron Lerner in a piece on Pink Ribbon Fatigue in the New York Times. While cancer awareness campaigns have heightened awareness about this condition, lessened women's fear of the disease and helped raise needed funds for research and care, some are finding the whole pink thing a bit too much.
But for more than 160,000 women living in the U.S. with advanced, stage IV breast cancer, the situation is not one they can turn off on their TV sets, or avoid by skipping out from pink-decorated malls: they're living and coping with the metastatic form of the disease, active treatments, side effects and, still, no known cure. Their outlook is tempered, maybe best portrayed in a spectrum of gray.
In October, 2009, the U.S. Senate and House voted to support the designation of October 13 as a National Metastatic Breast Cancer Awareness Day. The point of those proclamations was to draw attention to the needs of the metastatic breast cancer community.
"We want people to know we exist, that we're still alive," says Ellen Moskowitz, president of the Metastatic Breast Cancer Network. The day is not about general cancer awareness; it's about acknowledging the distinct needs of people who have the advanced, incurable form of breast cancer. "We've been hidden in closets," she says.