Navigating the First Moments with Metastatic Breast Cancer

The road ahead may seem daunting, but knowing what to expect and how to get the help you need when you need it is imperative.

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Milène Lanthier was 42 when she was first diagnosed with breast cancer in 2015. After a year of radiation, surgery and hormonal therapy, her doctors told her she was cured. Two years later, however, intense lower back pain sent her again to the doctor, and tests revealed the cancer had spread to her bones. “The first feeling is really one of having no more stable ground,” says Milène, of hearing that she had metastatic breast cancer (mBC). “You feel like you’ve lost control of the cancer. It’s a very, very deep fear.”

Milène is one of the thousands of Canadian women currently living with mBC, cancer that has spread from the original tumour to other parts of the body. Any cancer can spread to any part of the body or to the blood, but breast cancer typically advances to the bones, lungs, liver or brain. mBC is not just cancer that reoccurs; it can be diagnosed at any time—in fact, approximately six to 10 percent of the estimated 26,900 Canadians who will be diagnosed with breast cancer in 2019 will have the advanced form. It is estimated that 20 to 30 percent of those diagnosed with breast cancer will go on to develop mBC.

The relative five-year survival rate of mBC is 22 percent, though some women can and do live longer. While there is no cure for advanced stage mBC, there continue to be promising advances in treatment for the disease, with more on the horizon.

For most women, the first moments after hearing a diagnosis of mBC are traumatic and the emotions experienced—fear, sadness, isolation, confusion, shock—can be overwhelming. “It’s completely different from the first diagnosis, when you’re more in that fighter mode,” says Milène. “Once you’re Stage 4, when the cancer has metastasized, they don’t talk about winning and fighting. It was really tough.”

Getting focused enough to ask about what comes next is challenging. “During the first appointment, I tried to get as much information about the current situation,” Milène says. “I knew I was in no way able to discuss treatment. It’s too hard. It’s big news.” But before she left, she told her doctor that when she returned next, she wanted to talk about options.

While it may seem difficult to do early on, it’s what helps someone living with a metastatic disease to regain some sense of control. “Once you’ve had time to breathe and do a little research and look at the options, you’re more able to speak with your doctor and ask the right questions,” explains Milène. “You need to take charge of your health: eat well, exercise, do things you love and speak about it. Those are the kinds of things that will make you feel like you’re not just caught in a cancer tsunami.”

Sharon Young’s oncologist recorded their initial conversation after she was told that her breast cancer had spread. “I knew my chances of it coming back were pretty good,” says Sharon, vice-chair of the Canadian Breast Cancer Network. Still, getting the diagnosis left her numb and terrified. Going back to listen to that first conversation, to understand her situation and to be able to look at her options “was the start of me having a sense of control and being able to take action.”

It’s important for a woman to understand what her health status is and how that status will likely affect both treatment options and outcomes. Asking questions and taking notes about anything that isn’t understood is essential considering the overwhelming amount of information she is dealing with. Patients should find out whether they have a gene mutation and how that might affect treatment options. Genetic markers, or biomarkers, can indicate how a person could respond to treatment, so they are an important guide for doctors in their decision-making.

Clinical trials for mBC may be appropriate for some patients. Doctors can provide their patients with information about the benefits and/or drawbacks of participating in a particular trial if the patient is eligible.

Sharon has lived with breast cancer for more than 20 years and the past three with mBC. Today she looks at herself as someone who lives with a chronic disease—one that just happens to be cancer. “That’s how I reframe it because I have to live my life,” she says. “I’m doing things I want to do and I’m trying to take good care of myself and have fun with friends and family. With metastatic disease you really know you have to live every day that you’ve got.”

For more information about resources for women with mBC, their family members and caregivers, visit www.extraordinarymoments.ca.