Phenomenology is the guiding methodology for this study. It focuses on the concept of the lived experience. Phenomenology allows participants to lead the conversation and tell you their story.— Amanda Ginter, PhD
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Patients with breast cancer who perceive having enough and the right kinds of social support tend to be less stressed, although a paucity of research exists on the social support needs of young women with metastatic breast cancer, according to Amanda Ginter, PhD. Dr. Ginter, Assistant Professor in the Department of Family Studies and Community Development at Towson University in Maryland, is conducting a study aimed at better understanding the experiences and social support needs of young women with metastatic breast cancer. She presented her results in a poster and a presentation at the 2017 American Psychosocial Oncology Society Annual Conference in Orlando, Florida.1
When diagnosed, women younger than age 40 are more likely to be diagnosed with aggressive breast cancer and are also tend to be more likely to have metastatic recurrence. Women with metastatic breast cancer often face different issues from those of patients diagnosed with earlier stages of breast cancer, and young women with metastatic breast cancer have their own unique needs when facing the challenges of diagnosis, treatment, and prognosis.
Patients between the ages of 18 and 45 were recruited from metastatic breast cancer support websites, with the consent of program directors. Most participants had been previously diagnosed with stage I or II breast cancer and later on had a metastatic recurrence. At the time of the presentation, 9 participants took part in semistructured telephone interviews with the researcher, ranging from 60 to 90 minutes. (Data collection is ongoing.) A qualitative, phenomenologic study design was used to lend understanding to the lived experiences of young patients with metastatic breast cancer seeking formal and informal social support.
“Phenomenology is the guiding methodology for this study. It focuses on the concept of the lived experience. Phenomenology allows participants to lead the conversation and tell you their story,” revealed Dr. Ginter.
One major theme that arose from interviews was the idea that stage IV breast cancer is unique, because there is no stage V, said Dr. Ginter. Patients with metastatic breast cancer know they are likely to die of their disease.
Participants commonly cited irritation with the “pink-ribbon jargon” associated with October and Breast Cancer Awareness Month. “Hearing ‘You go, girl’ or ‘You’ve got this’ can be frustrating for women who have been told there is no cure for them,” she added.
Patients in the study also talked about the concept of being “METAvivors” and reconceptualizing what it means to be a survivor of breast cancer, when they will live with the disease for the rest of their lives. They brought up frustrations regarding physician assumptions about reproductive plans. Many wished their oncologist would talk to them about freezing their eggs, but said it was rarely addressed. Patients who had been diagnosed with metastatic recurrence said they were angry with their medical team for not having warned them that their cancer might come back more aggressively, and these same patients discussed how treatment changed when they had to make the transition from beating cancer to living with it.
Other Emerging Themes
Patients cited interpretation challenges regarding their prognoses. Many believed their prognoses were imprecise and their oncologist and medical team were vaguely supportive, although specific details were often missing from their conversations. “This was challenging for all of the participants,” stated Dr. Ginter. “They didn’t know what kind of time they had to work with or how to convey to friends and family how long they have left to live.”
Participants also discussed navigating dating and relationship progression as a person with metastatic breast cancer and reconciling the loss of their sex drive with intimate partners. They also mentioned problems with desires to make “bucket lists,” the lack of age- and stage-specific support groups, and the need for flexible financial planning.
According to Dr. Ginter, findings on the social support needs of young metastatic breast cancer patients—emotional, informational, practical, and relational—will inform oncology care providers of questions to ask and what appropriate age- and stage-specific recommendations to offer. She added that the findings might also be applicable to patients with other malignancies. ■
Disclosure: Dr. Ginter reported no potential conflicts of interest.
1. Ginter A: Social support needs of young metastatic breast cancer patients. 2017 American Psychosocial Oncology Society Annual Conference. Abstract F56.