The intensive treatment associated with IBC often leaves patients unable to work or manage the standard tasks of daily living. Social Security Disability has fast-tracked approval for patients with IBC as long as the disease is well documented in the medical record. Although this is helpful during the active treatment phase, patients may lose that coverage once treatment is completed and they have obtained the no evidence of disease (NED) status. The collateral damage from the chemotherapy may leave patients with severe neuropathy, lymphedema, cognitive issues, fatigue, and balance problems resulting in their inability to work for an extended period of time. This underscores the need to focus on supportive management of these symptoms.
Patients who remain in treatment due to de novo stage IV disease at diagnosis or recurrence face a unique set of challenges. Facing a future of endless scans and treatment can take a toll on the patient as well as their family/caregiver and support system. The support and help that comes during the initial diagnosis and treatment often wanes as treatment continues, thus emphasizing the need to support the caregivers involved with this disease as well.
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Thanks to ever increasing treatment options, patients with IBC are living longer even when metastatic disease is present. The physical and financial issues of the disease can present huge challenges for patients and their families. Adjusting to what’s called a new normal can be difficult. Throughout the cancer experience patients should have access to mental health support and be encouraged to talk with a counselor if needed.
Support is essential yet patients with IBC often feel uncomfortable in a support group of early stage patients. Family and friends often mean well but don’t realize the seriousness of the disease. Patients may find support via the Internet, but regularly reading about recurrent disease and even death in online groups can also be frightening. Nurses can help patients find appropriate support and information to meet the patient’s needs.
CONCLUSION
Most journal articles begin with the phrase “inflammatory breast cancer is a rare and very aggressive disease.” Reading those words may lead health care professionals to believe that they are less likely to see patients with this disease and consequently less likely to recognize the symptoms. When NCCN announced its new IBC treatment guidelines in 2008, Robert Carlson, MD, then breast cancer guideline panel chair, said “Any cellulitis of the breast that occurs in a nongravid, nonlactating woman should be assumed to be inflammatory breast cancer until biopsy proves otherwise.”7 Some may believe that those are strong words, however as long as women suffer because of a delayed or missed diagnosis, the need for extensive education and strong words continues.7
Ginny Mason is executive director of the Inflammatory Breast Cancer Research Foundation in West Lafayette, Indiana. Beth Overmoyer is director of the Inflammatory Breast Cancer (IBC) Program at Dana-Farber Cancer Institute in Boston, Massachusetts.
REFERENCES
1. Matro JM, Li T, Cristofanilli M, et al. Inflammatory breast cancer management in the national comprehensive cancer network: the disease, recurrence pattern, and outcome. Clin Breast Cancer. 2005;15(1):1-7.
2. Schinkel JK, Zahm SH, Jatoi I, et al. Racial/ethnic differences in breast cancer survival by inflammatory status and hormonal receptor status: an analysis of the Surveillance, Epidemiology, and End Results data. Cancer Causes Control. 2014;25(8):959-968.
3. Dawood S, Lei X, Dent R, et al. Survival of women with inflammatory breast cancer: a large population-based study. Ann Oncol. 2014;25(6):1143-1151.
4. van Uden DJ, van Laarhoven HW, Westenberg AH, et al. Inflammatory breast cancer: an overview. Crit Rev Oncol Hematol. 2015;93(2):116-126.
5. Inflammatory Breast Cancer. National Cancer Institute Web site. http://www.cancer.gov/types/breast/ibc-fact-sheet. Reviewed April 18, 2012. Accessed June 2, 2015.
6. Warren LE, Guo H, Regan MM, et al. Inflammatory breast cancer and development of brain metastases: risk factors and outcomes. Breast Cancer Res Treat. 2015;151(1):225-232.
7. NCCN guidelines for breast cancer are updated. In: Highlights of the NCCN 13th Annual Conference. Fort Washington, PA: National Comprehensive Cancer Network; 2008:24-30.
8. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Breast cancer screening and diagnosis. Version 1.2014. http://www.nccn.org/professionals/physician_gls/pdf/breast-screening.pdf. Accessed June 9, 2015.
9. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Breast cancer. Version 2.2015. www.nccn.org/professionals/physician_gls/pdf/breast.pdfcance. Accessed June 9, 2015.
