When most people think of metastatic breast cancer (MBC), they think of imminent death. They may assume that the metastatic breast cancer patient was negligent about checking her breasts or getting screening mammograms. A study compiled in partnership with the National Cancer Institute and the Metastatic Breast Cancer Alliance under the leadership of Musa Mayer and Marc Hurlbert in May 2017 shows that neither of these assumptions is true.
The study shows that of the approximately 150,000 women in the United States who are living with metastatic breast cancer, 75 percent were originally diagnosed at an earlier stage. Women who did everything right to diagnose their cancer at the earliest possible stage often relapse years later.
Collecting data about MBC patients can be difficult because their original staging level stays with them until they die of metastatic breast cancer or another cause. So in official records, that Stage I patient who recurred two years after her original treatment is still Stage I even though she has been living with metastatic breast cancer for the last seven years. This study used new statistical modeling methods developed by Angela Mariotto, Ph.D., of the National Cancer Institute to arrive at the best estimates of the number of MBC patients and their longevity.
Whether they were diagnosed initially with MBC (de novo MBC) or recurred later, survival times for these patients has been improving. In the early 1990’s, a de novo MBC patient between the ages of 15 to 45 had an 18 percent chance of surviving five years. A similar group diagnosed between 2005 and 2012 had a 36 percent rate of five-year survival.
Imminent death? Not for the 11 percent of MBC patients under age 64 diagnosed between 2000 and 2004 who survived 10 years or more. Clearly, these survival averages are still way too low. However, a person receiving an MBC diagnosis today has more reason to hope that she will be able to live long enough to see her children grow up than her aunt with a similar diagnosis 30 years ago.
According to the study authors, the aging population and improvements in treatment and account for the increasing number of MBC patients. As people live longer, there is more opportunity for that Stage I woman diagnosed when she was 55 to develop MBC at age 73. Patients who might have been sent home to die with no treatment 20 years ago now often have several treatment options that may slow or stop the cancer’s spread.
Metastatic breast cancer remains a serious health problem. Cancer that remains in the breast is not fatal. Your friend who died of breast cancer almost certainly died after those breast cancer cells spread to her lungs, liver, bones, brain, or another distant organ. Much work remains to be done on several fronts:
1. Getting accurate data. Until there is a way in the medical records system to track a breast cancer patient’s progress from early stages through the types of metastatic events she experiences, we will not have a full understanding of who experiences metastasis and where breast cancer cells go.
2. Understanding why cancers metastasize. Scientists have several theories about how cancer spreads, some of which have been proven wrong or inadequate. We used to think that if a cancer could be detected early and surgically removed with clean margins, the patient was safe. We pushed for early detection screening programs. However, we now know that cancer cells may have escaped from a tumor long before the tumor was detectible with a screening device, and that these cancer cells may lie dormant for years. More research is needed to understand the mechanisms of metastasis.
3. Developing treatments for metastatic patients. Most MBC patients will need to be in treatment indefinitely, so they need effective treatments with the fewest number of side effects. Extending life is important, but so is quality of life.
4. Controlling the cost of treatments. MBC patients hope to live for years, but years of medical bills can be disastrous. While many MBC patients are able to work, frequent medical appointments and the debilitating effects of the spreading cancer and the treatments may make it impossible for a woman to stay with her job and her employer-provided health insurance.
If you have been diagnosed with metastatic breast cancer, you can be hopeful that you will be in that group of patients who survive for years. Seek out the best cancer experts to help you understand where your cancer has spread and your options for treating it.
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.