Many people living with advanced breast cancer describe the moment they learned of their diagnosis as “truly devastating.” Patients can feel betrayed by their bodies or angry. Some second guess treatment decisions they made when initially diagnosed. Coming to terms with a diagnosis of advanced breast cancer is very individual and affects each patient differently.

The reality is many women are living with metastatic breast cancer (MBC) and live long active lives during treatment. A recent study from the National Cancer Institute (NCI, 2017) showed that despite a poor prognosis, survival rates are increasing and between 1992-1994 and 2005-2012 five-year survival rates in women diagnosed with MBC, ages 15-49, are estimated to have doubled from 18 to 36 percent. In many cases, Stage IV Breast Cancer can now be considered a chronic illness. While this is good news, there are many considerations for patients with MBC.

The clinical breast team must address the management of the long-term side effects of ongoing chemotherapy treatments—both oral and infused—radiation treatments, complications including secondary malignancies and distant recurrence. Often, the oncology social worker is integral in addressing how these treatment-related challenges affect the patient’s quality of life.

Survival rates for women with MBC are increasing. Angela Mariotto, Chief of the Data Analytics branch of the Division of Cancer Control at the National Cancer Institute, related, “Even though this group of patients with Metastatic Breast Cancer is increasing in size, our findings are favorable…women are living longer with Metastatic Breast Cancer…longer survival means increased needs for services and research” (Bantug, Saiki, Zorzi, Stearns & Wolff, 2017, p. 146). Cancer programs nationally have evolved and expanded to include support service teams to address this growth. Increased services addressing nutrition, body image, mindfulness, art and music interventions, and strategies to address patient distress have prompted increased psychosocial support.

There is also a focus on improving patient survivorship. While survivorship care plans were designed to help patients address long-term medical issues and lifestyle choices, patients with MBC are not typically given such a plan. Whereas psychosocial distress screenings are completed at pivotal visits throughout the cancer continuum, the Commission on Cancer Standard 3.3 requires survivorship care plans for “Stage I,II, or III cancers that are treated with curative intent and have completed active therapy” (https://www.facs.org, 2016). One would argue that survivorship for patients with metastatic disease would be equally important to address. Patients diagnosed with MBC have varying reactions to the need for ongoing monitoring and treatments and the need to palliate vs. cure. Changes in treatment regimens, side effects of medications and treatments, and increased trips for medical follow-up present unique challenges. Psychosocial stressors—such as employment, insurance and financial issues, adjustment issues including depression, anxiety and difficulty coping—can arise. Over time, these concerns can exacerbate and ultimately affect not only the patients but also their families and even the breast care team.

Current survivorship care plans focus on the early stage patient and preventive measures, and follow-up care needed to decrease future cancer risk. A care plan for a patient with metastasis would need to be modified to chronicle past treatments, their resulting side effects and toxicities, which may cause secondary complications. To accomplish this, the Johns Hopkins University and Comprehensive Cancer Center in March 2016 piloted survivorship care planning with the metastatic breast cancer patient to “address the evolving survivorship needs in their trajectory from initial diagnosis of advanced disease to end-of life care” (Bantug et al., 2017, p. 146). They are continuing to collect  data with the goal of “promoting individualized services within the metastatic setting and improve the quality of life for this population” (Bantug et al., p. 146). This will certainly provide much needed information and guidance as the cancer community continues to define the meaning of survivorship for all patients with cancer.

Longer survival rates for patients with MBC will certainly increase patient needs and affect family dynamics, employment and lifestyle choices, which will increase the need for psychosocial interventions. While MBC is not a curable condition, new treatments can prolong life and delay its progression. Psychosocial support and interventions are crucial for these patients. Survivorship care plans may address long-term, cancer-related symptoms and complications and how they ultimately relate to patient adjustment and quality of life. Regardless, caring for patients with MBC will continue to be a challenge for oncology social workers.

References

Bantug, E., Saiki, C., Zorzi, J., Stearns, V., & Wolff, A. (2017). Piloting survivorship care planning with the metastatic breast cancer patient. Journal of Clinical Oncology, 34(26_suppl): 146.

Commission on Cancer. (2016). Cancer Program Standards: Ensuring Patient-Centered Care. https://www.facs.org/quality-programs/cancer/coc

National Cancer Institute. (2017). Study estimates number of U.S. women living with metastatic breast cancer. https://www.cancer.gov/news-events/press-releases/2017/metastatic-breast-cancer-survival-rates