To find participants with stage 4 breast cancer for my survey, in 2019 I sent out requests through online support groups, cancer organizations and societies, and word of mouth. Ultimately 310 women completed a questionnaire about their experiences with metastatic breast cancer, such as perceived support, feelings about breast cancer organizations and the pink ribbon, and ways of coping.

I selected 33 of those women to participate in in-depth interviews to provide additional information about some of their survey answers.

I’m a member of several metastatic breast cancer social media groups. For the purpose of this article, I asked people in these groups to share their thoughts about Breast Cancer Awareness Month and specifically the term “survivor.” Most people who responded aren’t overly excited about October: They don’t find terms like survivor and related language relevant. Nor do they feel the pink ribbon represents them.

Of the women who took my original survey, the majority – at least 70% – felt that pink-ribbon events tend to minimize the seriousness of metastatic breast cancer and tend to ignore stage 4 altogether. They also believe that pink-ribbon campaigns focus too much on breasts and selling products and services, a practice known as “pinkwashing.”

As one respondent in a social media group wrote, “I don’t like the term survivor. That and October are aimed at early stage cancer, not at supporting people who have Stage 4 cancer. We won’t survive. We aren’t going to be cured. Early detection didn’t save many of us. Removing boobs didn’t save us. All the pinkwashing does nothing to help us.”

Asking women to rate their preferences on a scale of 1 to 4, from “not at all” to “a great deal,” I found that far more metastatic people prefer “patient” and “a person who has cancer” over the term “survivor.”

On average, many participants also say there isn’t much recognition that those with metastatic disease have a different treatment plan. Often, stage 1 to 3 patients can look forward to a treatment end date after they finish radiation, surgery – mastectomy or lumpectomy – and what are called systemic therapies, such as chemotherapy. The vast majority of metastatic patients will be in treatment for the rest of their lives.

For stage 4 breast cancer, there is some debate as to whether lumpectomy or mastectomy are effective options. The effectiveness of radiation treatment is also debatable. So metastatic patients more typically receive chemotherapy and – more recently – immunotherapy, with no surgery.

I also learned that many stage 4 breast cancer patients find it necessary to manage the diagnosis in ways that don’t apply to those with earlier stages. Metastatic patients must go into treatment simultaneously hoping the drugs will calm the cancer and confronting potential end-of-life issues. They may worry about leaving their families. Some may set milestones, such as seeing their children or grandchildren graduate from school or get married.

They may also be contending with issues like how many possible treatment options are left, or maximizing both quantity and quality of life amid a range of side effects.

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