What is metastatic breast cancer and why is it so misunderstood?

When news broke on Aug. 8 that Olivia Newton-John had died after having "battled breast cancer for 30 years," it wasn’t quite accurate — because for the majority of those years, after a 1992 diagnosis and treatment that included chemotherapy, a partial mastectomy and reconstruction, the pop star remained cancer-free.

It was only after the breast cancer returned — first in her shoulder, in 2013, and then in her sacrum, in 2017, neither announced until 2018 — that she was once again a person with cancer, eventually with stage IV, or metastatic breast cancer (MBC), which has no cure.

While the metastatic part was largely reported in the case of Newton-John’s death, likely because she was so public about her cancer and also a fierce advocate, many other high-profile breast-cancer deaths leave that detail out.

Instead, the officially cited cause is typically “complications related to breast cancer” (Cokie Roberts), “breast cancer” (Kelly Preston) or, simply, “cancer” (Diahann Carroll). Almost never does “metastatic” get a mention — though one report about Newton-John inaccurately claimed she had died after a “30-year-battle with metastatic breast cancer,” which is possible, but extremely rare.

“I honestly think a lot of times the media doesn’t get the right information,” Susan Rahn, a breast cancer advocate, speaker and blogger, tells Yahoo Life.

But whenever possible, “we need to be very clear and honest about what we die from, and it’s not ‘complications from breast cancer,’ it is metastatic breast cancer,” Pam Kohl, a patient advocate at Susan G. Komen Breast Cancer Foundation and founder of the Komen Metastatic Breast Cancer Collaborative Research Initiative, tells Yahoo Life. Kohl has been living with metastatic breast cancer (MBC) for more than five years — a milestone that less than 30% of women living the disease ever reach.

"People who get early diagnosed feel like they have a cure. I say to be vigilant and don’t let doctors dismiss you if you have a new pain,” Kohl, 70, stresses. “It could be anywhere and we won’t know it.”

Of all early breast-cancer survivors, 30% will see the cancer return as metastatic.

“I don’t mean to be dark and gloomy, because 70% will be fine and will not become metastatic,” Kohl says, “but 30% will, and we must, must keep people in the real world about being vigilant.”

That, says Dr. Elizabeth Comen, a medical oncologist specializing in breast cancer at Memorial Sloan Kettering Cancer Center in New York City, means being aware of "new and different pains and symptoms that don’t improve, meaning something that gets worse over a few weeks and is not intermittent." She acknowledges that it can be difficult to balance vigilance with hyper-anxiety.

"Any cancer patient walks this tightrope of wanting to put behind them the physical and emotional trauma of diagnosis and also not wanting to be in denial," Comen tells Yahoo Life. "That’s why we have follow-up care with doctors, and it’s important to have not only an oncologist but a primary care oncologist as part of your team."

Metastatic breast cancer facts

According to the Metastatic Breast Cancer Network (MBCN), breast cancer that has spread outside of the breast to other organs such as bones, liver, lung or brain has metastasized; it is still breast cancer, and the misunderstanding around that is probably the biggest misconception around MBC, says Comen.

“It's the misconception that metastatic disease is … liver cancer or bone cancer… when, in fact, metastatic breast cancer is breast cancer cells living in a new location," Comen explains. "Even when asking about a patient’s family history, I’ll hear, 'My mom had breast cancer in her 40s and then later had bone cancer,' but almost always it was metastatic breast cancer. So it’s important to understand family history, but also because it really informs a patient’s awareness of how we will treat the disease. And the way we treat liver or bone cancer is very different from how we treat metastatic breast cancer."

Of the 3.5 million people living with a history of breast cancer in the U.S., an estimated 155,000 are stage IV.

There are approximately 40,000 breast cancer deaths each year, with men representing 1%. It's a number that has remained essentially unchanged for 20 years, notes MBCN, adding, "All deaths from breast cancer are caused by metastatic breast cancer."

While early detection is an important tool for finding and treating early cancer, it does not prevent it from returning as metastatic, as it will for 20% to 30% of early-stage patients; another 8% of new breast cancer cases are metastatic from the initial diagnosis. Women under 40 represent 3% of breast cancer deaths.

While there is no cure for MBC, there is a range of treatments, including chemotherapies and radiation, as well as clinical trials that can prevent further spread and manage systems, allowing patients to live for as long as possible with a good quality of life. At times, metastases will be no longer be detectable in a scan, but treatment continues because breast cancer cells are still in the body.

Comen stresses that it's important for people, especially breast cancer patients or survivors, to understand that there is a huge range of treatments and outcomes depending on the individual and the type of breast cancer, and how Newton-John reacted to the disease and its treatment won't be how everyone responds.

"It’s extremely triggering to breast cancer patients to hear about the death of such an iconic figure and very easy to personalize it," she says. "But every individual makes their own choices about treatments and how to face treatment on their own terms. We don’t really know what goes on in people’s private lives."

When it comes to treatment, the goal, say researchers, is to make it a chronic disease much like diabetes or HIV/AIDS, with patients remaining stable on medications for 20 years or more. Prevention goals, Comen says, include being able to detect isolated cancer cells before they begin their destruction. "It's an area where we need a lot more research and science to guide us," she says."

According to a study of the Metastatic Breast Cancer Alliance, only 7% of funds for breast cancer research are spent on looking into MBC. But Kohl believes it’s slowly changing. “A lot more money is going into it, because we have become louder, we have new drugs, and we are living longer,” she says.

To make a difference, Rahn suggests, stay away from buying the random pink items at the grocery store that claim to send a percentage to breast cancer research. Instead, she says, “give to the organizations like Breast Cancer Research Foundation, which has a metastatic grant section, or Metavivor, or the Cancer Couch Foundation,” where “you can donate and know exactly where your money goes.”

Why MBC is so hard to understand — but why it matters

“I think that part of it is that we’ve done such a great job of making people feel good about breast cancer … because we do such a great job of celebrating, quote, survivors,” says Kohl. “Nobody dies from a tumor in your breast — you die when breast cancer moves to other parts of the body.”

Rahn, who has been living with MBC for nine years (and says her current treatment, Ibrance, has been working for six), believes that changing the pretty, pink, curable narrative is important because it’s not the only story.

“That whole ‘early diagnosis saves lives’ thing bothers me … because mammograms are a tool to find cancer if it’s there, but it’s the pathology that determines what happens,” she says. “It had already gone to the bones when I was diagnosed. … People keep pushing this, ‘If you’re diagnosed with breast cancer it’s the good kind, and if you go for five years you’re cured’ narrative. People want to talk about the good things. They don’t want to hear about the scary, negative things.”

Still, Rahn believes, “Knowledge is power … positive thinking isn’t going to keep it away.”

Kohl was first diagnosed with early-stage breast cancer, which was treated with a lumpectomy, radiation and endocrine therapy.

“I was told I was cured,” she says. Then, three years later, in 2016, she had a local recurrence, meaning in her breast (which is curable), leading her to undergo a mastectomy. But knowing about MBC from working at Komen, she recalls, she insisted on a scan (not always offered), which revealed the bad news. “I had a recurrence in lymph nodes and in my lungs, and life just totally changed at that point,” she says, referring to constant treatments, side effects, monthly bloodwork and undergoing full body scans every three months.

But that hasn't stopped her from speaking the truth.

“Even when you talk to a lot of people and say ‘metastatic,’ they still think you can be cured," says Kohl. "They say, ‘You’re going to fight! You’re going to win!’ and I have to say ‘no, there is no cure.’ It’s treatable, but … it’s like I’m walking down the sidewalk in high heels and I’m going over the heat grate and I get caught and I see the bus coming. That’s what living with MBC is like.”

Not to mention what it’s like for loved ones. “My daughter says she’s always waiting for the other shoe to drop,” she adds, explaining that a way to cope is to “intentionally create memories, and always have a plan B in case you’re in treatment” and to both live for today and make plans for the future.

For example, Kohl says, “I went ahead and bought Bruce Springsteen tickets for 2023 — and a trip to Italy.”

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