Metastatic breast cancer is breast cancer that has spread outside of the breast and to distant parts of the body, such as the bones, brain, liver, or lungs. Metastatic breast cancer is also referred to as advanced or stage IV breast cancer, and though it is not curable, it is treatable. Treatment often focuses on extending a patient’s life and ensuring the best possible quality of life.
In a recent Dana-Farber Facebook Live Q&A, Liz Farrell, LICSW, and two of our patients, Hanna Homenko and Krista Lawrence, talked about what it’s like to live with a metastatic breast cancer diagnosis. Here are five notable pieces of advice that they shared. Farrell is a social worker at Dana-Farber Cancer Institute who specializes in working with women who have been diagnosed with metastatic breast cancer.
Take time to process and acknowledge your diagnosis before trying to explain it to others
When Homenko first learned about her diagnosis, “there was a lot of fear and a lot of unknown,” she said, “but you learn to navigate through, and learn that there are ways you can treat [the cancer]. ” She advises other patients to educate themselves about the disease, which can be empowering, and can also serve as preparation for telling others about a diagnosis. Though telling friends and family can be difficult, Homenko looks at is “as an opportunity to provide information and advocate for funding,” she said.
Don’t go to the internet for all of the answers
The information that metastatic breast cancer patients find online will not always be relevant to their cases, and can create unnecessary fear and worry, according to Liz Farrell, LICSW. To get the most accurate information, ask your care team questions, and look for educational materials offered by your care team.
Be honest with your family and your children
Telling family and friends about a diagnosis can sometimes be the hardest part of being diagnosed with an incurable illness such as metastatic breast cancer, especially when it comes to young children. Farrell recommends consulting with a social worker to figure out the best approach of telling children about a diagnosis.
“Our social worker was extremely helpful in guiding us in how and when to tell our children, and how best to approach the conversation,” Homenko said.
Being prepared for the questions family members may have, and having honest responses to these questions, can help reduce the anxiety that family members may have about the illness. Importantly, to make sure the emotional burden of comforting family and friends does not fall on the patient, Farrell says “kids and caregivers should have their own emotional support”—for example, social workers or therapists, or a network of friends.
Don’t be afraid to reach out for, or to accept, help
Many people who are diagnosed with cancer find it hard to ask for help. But friends and family can help make the day-to-day a little bit better, whether it’s in the form of a ride to your cancer center, someone to watch the kids while you are receiving treatment, or a ready-made meal.
Letting your loved ones know specifically how they can help, and letting them know what areas you have under control, is another way to channel their well-wishes into something that helps you manage your routine. “Your friends want to help, but often don’t know how,” Homenko said.
Look into resources for patients with metastatic breast cancer
Farrell recommends joining a support group for women with metastatic breast cancer, either at your cancer center or online. Homenko and Lawrence are both members of such a support group at Dana-. After receiving her diagnosis, Lawrence did not know how to cope with it, but regularly attending the support group “offers the opportunity to see women who are living life with metastatic breast cancer all stages,” she said.
Farrell also emphasized that anxiety and depression can be common for metastatic breast cancer patients, and that resources for emotionally and psychologically supporting patients and families alike are paramount. A patient’s care team, which consists of oncologists, nurses, and pain and palliative care services for most patients, should also include a social worker or outside therapist to help patients and their support system with larger emotional issues that may be triggered by the metastatic breast cancer diagnosis.
Learn more from the Metastatic Breast Cancer Program at Dana-Farber Cancer Institute and call 617-632-5606 for more information on support groups.