When I was a girl in the 1970s, my best friend’s mother, Ginger *, was diagnosed with breast cancer. At the time, treatment was typically radical mastectomy followed by chemotherapy and radiation. My friend’s mother had treatment, but the cancer returned and metastasized (spread) to her lungs.
In the ’80s and’ 90s, research continued, new treatments became available, and Ginger could see her three amazing daughters graduate from high school and college. She was also there to plan their weddings and to welcome five beautiful grandchildren into this world. She shaped me and all of Michele’s friends and showed us how great women can be. Ginger was my hero, I absolutely loved and adored her and still do. She was also a nurse – and she inspired me to become one too.
That experience taught me something, both as a woman and as a nurse. Diagnosing terminal cancer is scary and can feel overwhelming, but that doesn’t mean it’s hopeless. While research and new treatment options are scary and extremely challenging, they offer opportunities for people with metastatic cancer to lead longer and more active lives.
Metastatic breast cancer
Metastatic breast cancer (MBC, also known as stage 4) is breast cancer that has spread to another part of the body such as the liver, brain, bones, or lungs. It usually develops months or even years after a person is diagnosed and completed treatment for breast cancer.
About 30% of women diagnosed with early breast cancer will develop metastatic disease, while 6% of women will already have MBC by the time they are first diagnosed. In the US alone, an estimated 168,000 women lived with MBC as of 2017.
We need to educate women about the symptoms of MBC and raise awareness of the importance of early diagnosis. It’s important to note that not only women over 40 are at risk for MBC, but younger women as well. The symptoms of MBC vary depending on where the cancer has spread.
Bone metastases: The cancer most commonly spreads to the ribs, spine, pelvis, or the long bones in the arms and legs and may be accompanied by a sudden new sharp pain. The pain can come and go first and then become permanent.
Lung metastases: Symptoms may include shortness of breath, wheezing, coughing (with or without blood and phlegm), and pain. Symptoms may reflect a cold or an upper respiratory infection. However, if they persist for more than a week, see your doctor.
Brain metastases: Seizures, headaches, memory problems, mood or personality changes, language disorders (and other sensory changes controlled by the brain), and strokes can all indicate brain metastasis.
Liver metastases: Since cancer that spreads to the liver often has no symptoms, it will usually be detected by blood tests. If symptoms are present, they may include fever, weight loss or loss of appetite, gas, tiredness, swelling of the legs, pain in the midsection, and a yellowing of the whites of the eyes or skin.
In all cases, it is best if you are a breast cancer survivor and notice any of the above symptoms or feel like something is wrong.
It is important for women to understand that there is a lot of research going on and treatment options that have improved and continue to improve survival time. About a third of women in the US live at least five years after being diagnosed, and some women may live ten years and even longer than their diagnosis of MBC.
In addition, women with MBC should be aware of the clinical studies that are being conducted in new treatment options. The National Institutes of Health offers a tool at clinicaltrials.gov that allows users to search studies for specific diseases and geographic locations. It is important that women participate in these studies, especially women of skin color and of all ages.
In retrospect, I imagine that being diagnosed with incurable breast cancer must have been really scary for Ginger, especially since there were so few support networks and resources for women. Fortunately, we’ve come a long way in the past 50 years.
Regardless of the type of breast cancer diagnosis you get and the quest for the best medical treatment, it is important to formulate your plan for living with the disease. If you have any questions, reach out to your doctor, find support groups, talk to your friends, and take advantage of the many resources available online, including us at HealthyWomen.
Most of all, stay hopeful.
* Ginger is a pseudonym.
This resource was created with the assistance of Daiichi Sankyo and Sanofi Genzyme.
Susan G. Komen
National Breast Cancer Foundation