6 Things Women With Metastatic Breast Cancer Want You to Know

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Real women open up about what it’s like to live with stage 4 breast cancer, plus how you can help.

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Metastatic breast cancer 101 

More than 236,000 American women are diagnosed with breast cancer every year. Among those women are mothers, sisters, and friends—people we look up to and strive to support. But knowing what to say or do for someone who’s sick can be challenging, especially when they’re suffering from a late-stage diagnosis like stage 4 breast cancer.

Also called metastatic breast cancer, stage 4 breast cancer accounts for about 6 to 10% of all new breast cancer cases, which means most people with metastatic breast cancer are initially diagnosed at earlier stages of the disease. Around 150,000 American women are currently living with metastatic breast cancer, which reaches stage 4 when it spreads to the bones or other organs in the body.

Metastatic breast cancer (or MBC) is fatal, but the diagnosis isn’t a hopeless one. In fact, a recent study conducted by the National Cancer Institute found that there are more women living with MBC than ever before. Though that may sound like a bad thing, it actually means patients are living longer with the disease, thanks to improvements in treatment.

We reached out to Ford Warriors in Pink’s Models of Courage and the National Breast Cancer Foundationto connect with women facing the late-stage disease. Here, seven women with metastatic breast cancer open up about the things they wish others knew about the illness and offer advice about the best ways we can support people who have it.

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Metastatic breast cancer is an ongoing struggle

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A lot of people don’t realize that treatment for stage 4 breast cancer never ends. “I often get asked how many rounds of chemotherapy or infusions I have left, but the truth is there’s no endpoint,” says Uzma Yunus, a psychiatrist who has stage 4 breast cancer that’s spread to her liver and skull. “I will be on a medication until it stops working, and then I’ll look for the next agent that might help.”

Women with late-stage breast cancer also check in with their doctors for frequent scans, sometimes as often as every three months, to make sure the disease hasn’t spread anywhere else in the body.

Stephanie McCord, 40, whose stage 1 breast cancer came back as MBC two years ago when it spread to her lungs, liver, bones, and stomach, echoed Yunus’s remark: “My breast cancer is never going away,” McCord says. “Stage 4 is a war, every day.”

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Ban the idea of ‘beating’ breast cancer

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“When we talk about ‘beating’ breast cancer, or when we call breast cancer ‘a battle,’ it puts a burden on the patient,” Yunus says. The problem? This kind of narrative comes with an expectation that a person has to win, or that their fate is within their control as long as they’re strong enough.

“It’s not our fault if it comes back,” adds Yunus. And "losing the battle" altogether isn’t a sign of weakness, either.

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I don’t obsess over death

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Lauren Hufnal, who was diagnosed with stage 4 breast cancer just six months after giving birth to her son, says she tries to stay positive no matter what.

“I’m focusing on new mom milestones,” she tells Health. “Hearing my son say his first words was my motivation at first.”

Yunus added that despite having an incurable disease, she doesn’t waste time thinking about death constantly: “People expect that I’m preoccupied with death every day, but I’m not. I do normal things, like go to meetings at my kids’ school and buy my own groceries.”

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Looks aren’t everything

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“A lot of people think you’re supposed to look like you’re on your deathbed [if you have metastatic breast cancer],” says Diane Hockensmith, whose stage 3 breast cancer metastasized in 2014. “But that isn’t the case.”

Yunus agrees. “How we look doesn’t reflect the status of the disease,” she says. “People often say to me, ‘Well, you look great!’ That’s nice, but it doesn’t change the fact that my illness is progressing.”

Ask your friend how she’s feeling, rather than assuming she’s doing well based on her appearance.

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Talk about other things

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While she says it feels great to know how deeply others care about her, Shanette Caywood, who was diagnosed with stage 4 breast cancer at age 32, finds it challenging to rehash her medical news over and over again. “When you keep talking about it with people, you’re reliving it again,” she says. “That’s especially hard when it’s not something you always want to talk about.”

Ask your friend whether she feels up to cancer talk before you launch into a conversation about it.