Every October, it seems like hospitals, doctors’ offices, and cancer centers are swathed in pink. Breast cancer awareness month ushers in a wave of publicity surrounding cancer survivors, encouraging everyone to advocate and celebrate advances in research and treatment.
For some people, the color and the messaging are more muted. The pink ribbon has become a powerful symbol of breast cancer awareness and survivorship. Still, the familiar narrative of finishing treatment and moving forward doesn’t reflect the reality of living with metastatic breast cancer (MBC), where treatment may continue indefinitely.
This week was MBC awareness day. Around 200,000 people in this country are living with MBC, meaning the disease has spread beyond the breast to other parts of the body. MBC is responsible for virtually all breast cancer deaths, an estimated 43,000 this year in the U.S. alone.
The burden is significant, but so is the progress. Fifty years ago, only about one in four women diagnosed would die of their disease within five years. Today, over 90% survive 5 years or more. And thanks to better screening, about two in three breast cancers are now caught early, before they've spread beyond the breast, when a cure is still possible.
That progress is real, and it's worth celebrating. But it has also sharpened a divide, and every October, I watch one side of it go unseen.
We tell two stories about breast cancer this month. One is about early detection: get your mammogram, know your risk, catch it early. The other is about survivorship: treatment ends, life resumes, it’s time to ring the bell. Both stories matter. But a growing number of women fit neither one. Their cancer doesn't get caught early or it comes back and treatment doesn't end. It's managed, sometimes for years, even decades, one line of therapy after another, each one working until it doesn't.
We've started calling this the "invisible middle." It's invisible partly because the medical system isn't built to see it. We focus so much of our efforts on the immediate diagnosis, supporting people who need to get through treatment and caring for people who end up hospitalized or who become very sick at the end of life. People with metastatic disease are living in the space between those two structures, sometimes living well and productive lives, while still dealing with side effects from cancer treatment and a fear of mortality. Is pink really their color? They may not need more oncology visits, but they also don’t belong in many low-touchpoint survivorship programs either. Consider what "managing their care" actually requires. It means scan results every few months that can upend a treatment plan overnight. It means new side effects to address every time therapy changes. Symptoms like neuropathy, fatigue, and cognitive changes get stacked up as the list of regimens grows. It means explaining to an employer, a partner, or a child why "in treatment" may not be temporary and why “getting past cancer” may not be an appropriate goal. And it means navigating all of this without knowing where you belong.
Survivorship care has historically been built around life after treatment, while palliative care serves a different set of needs. People living with metastatic disease can fall somewhere in between, with ongoing needs that our traditional definitions of cancer care were not designed to address.
Support for people living with cancer does not require a complete overhaul. High-value care can be accomplished with low-cost personalized touchpoints to address symptoms from therapy. It should include robust behavioral health care from human providers experienced in managing chronic illness, teaching coping skills through individual and group support. It means not dismissing regular preventive care and maintaining involvement from primary care providers to address medical conditions that arise as people celebrate more birthdays and age. These are not huge investments or costly drugs, but they mean better quality of life for people who are living with cancer longer. It also allows them to live productive lives at work, at home, at school, in our communities.
Breast cancer accounts for the highest overall treatment costs of any cancer in the U.S. In 2020 alone, it accounted for 14% of all cancer-related costs, $26.2 billion in medical services, and $3.5 billion in prescription drugs. Infusions, oral therapies, scans, and specialist visits continue indefinitely, and so do the copays, the missed workdays, and the caregiving strain on families — the price of a chronic illness without the label, the resources, or the community chronic illness usually comes with.
Who is checking in when a woman goes quiet for a month because she's overwhelmed? Who is coordinating between the oncologist managing her disease and the cardiologist managing the effects of years of therapy? Who is helping her think through disability paperwork, or talk to her kids, or simply feel less alone in a month that isn't designed with her in mind?
This is not a hard problem to start solving. It doesn't require a new drug or a new device. It simply requires long-term support and the realization that, for many patients, treatment may never truly end. Some of it can be done simply by oncology practices asking a different question: not "when does this patient graduate from active treatment," but "how do we support this patient for as long as she needs it."
October should make room for this group. Pink ribbons and survivor stories are not wrong, but they are incomplete. Somewhere in every audience wearing pink this month is a woman who has been in treatment longer than she can remember being out of it, quietly wondering if anyone is telling her story.
They deserve more than a mention. She deserves a system built to see her.