Breast cancer awareness campaigns too often overlook those with metastatic breast cancer – here's how they can do better | Health & Fitness

I surveyed participants about the degree to which they feel excluded from breast cancer organizations, and why. They firmly indicated feeling a recognition gap among breast cancer organizations and awareness campaigns. So many seem to emphasize early detection and survivorship, and leave out the concerns and needs of metastatic patients.

One respondent talked about the “early detection mantra.” Another referred to the “ringing of the bell,” a common celebratory ritual when one is done with chemotherapy or radiation. I’ve been known to use the phrase “that damn bell” to express frustration that I will always be on treatment and won’t get to ring that bell.

People echoed these same sentiments when I posed my question in social media groups. One woman wrote, “I am not going to ever be a survivor. Feels like we are the under belly. … No ‘you got this.’ … There is no stage 4 fanfare.”

Many women with stage 4 breast cancer also feel like little is being done to showcase the less optimistic and more frightening aspects of metastatic disease.

Several organizations are starting to fill these gaps. Some are devoting themselves to funding research for breast cancer, while others are now paying more attention to stage 4 patients – or at least moving in that direction. Metavivor is one organization focused exclusively on serving the metastatic breast cancer community. The Susan G. Komen organization has also begun offering resources and information about metastatic breast cancer.

I see hopeful signs that some of these efforts are making a difference. Just the other day, I stopped by my cancer center’s gift shop to buy some mastectomy bras and saw that they were handing out pink-ribbon bracelets. So I asked the woman running the shop if they could get bracelets representing metastatic breast cancer. I was encouraged that – without hesitation – she said it shouldn’t be a problem.

This is an updated version of an article originally published on Oct. 29, 2021.

This article is republished from The Conversation, an independent nonprofit news site dedicated to sharing ideas from academic experts. It was written by: Rachel Kraus, Ball State University. The Conversation has a variety of fascinating free newsletters.

Rachel Kraus receives funding from the Society for the Scientific Study of Religion and the Louisville Institute.