October 13 was National Metastatic Breast Cancer Awareness Day. Last Friday, a new collaboration amongst breast cancer organizations -- the Metastatic Breast Cancer Alliance -- was announced, and the Dr. Susan Love Research Foundation is one of the 15 founding members. Why?
I have written about my difficulties with the concept of calling people who have completed cancer treatment "survivors." This implies that the "enemy" has been vanquished, never to return. I wish it were that simple. The development of technology that can detect isolated microscopic cancer cells in the blood of people with early breast cancer has made us acutely aware that breast cancer cells "get out" before diagnosis in the majority of people. Some of the cells that leave the breast probably die in transit, while others find new niches where they hide out, dormant, until you either die of something else or they wake up. In fact, that is the exact argument for giving people with "early" disease adjuvant treatments with chemotherapy, hormones, Herceptin or some combination of the above. We are treating the micrometastases that we suspect are there even if our tests and scans cannot show them or even show that they are gone. Knowing that they are there is just a matter of how hard we look for them. It wasn't that long ago that we considered someone to have metastatic disease when a physical exam demonstrated palpable disease in a mastectomy scar or obvious disease in a bone on an X-ray. Now with more sophisticated methods of detection, we consider someone to have metastatic disease when a sensitive PET scan or blood marker test shows evidence of disease. It is likely that we will soon lower the bar further to include people with circulating tumor cells in their blood but normal scans and markers. Does that mean that we all have metastatic disease? Probably! The question becomes not whether it is there, but rather, whether it is causing problems that need treatment.
I think it is important to realize that the goal for all of us is to live as long as possible with the best quality of life that is possible, whether we have cancer, have cancer but don't know it, or just haven't developed it yet! The cure must not be the measure of success! And women with known metastatic disease must not be thought of as different than those whose disease may just be dormant. Think of AIDS. While we do not have the cure, we have enabled many people who thought they were facing an early death to live reasonable lives with a chronic disease for longer and longer periods of time. While our goal is often expressed as the cure, control may not be a bad temporary compromise.
So in honor of all our sisters and brothers living with known metastatic disease, let us honor their experience while recognizing that theirs is a much bigger club than we have previously acknowledged. It's a club that many of us may be members of but just don't know it yet. We need to go beyond the artificial separation of stages and recognize that all invasive breast cancer is metastatic from the beginning. The issue is whether the cells are under control or causing problems!
We need to join together to call for research into the cause of the disease while fighting for better treatments. And we need to all contribute to research whenever possible to move things forward, not for one subgroup or another, but for all people whose lives have been touched with the disease! Together we are stronger than the disease.
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