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Metastatic breast cancer 101
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 Foundation
to 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
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
“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
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
“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
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.
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Just do it
Of course it’s
thoughtful to ask someone with breast cancer how you can help, but
probing her for a to-do list can actually cause stress: “Asking someone
who is ill what you can do for them puts the burden back on their
shoulders,” says Terri Dilts, who has been in treatment for breast
cancer for 17 years.
Her advice? Don’t ask, just do. “Create a Meal Train or Share the Care group online. That way others can sign up to help, and the burden is no longer on the patient.”
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Family matters
Though a
lumpectomy, chemotherapy, and radiation helped McCord get cancer-free
after she was diagnosed with stage 1 at age 28, the disease came back 10
years later.
“It was only when I was
diagnosed the second time that I realized how much my husband and two
sons needed extra support,” she says.
McCord felt comforted knowing her boys were going to the movies with friends,
or out playing golf with family. Plus, it helped restore normalcy to
their lives. “It was an important outlet for them,” she adds.
Plan some one-on-one time with your friend’s family members or significant other to show them they’re not alone in this.
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Lend a hand (literally)
Help with meals
and carpools is always welcome, but assistance can extend beyond the
kitchen or car too. One suggestion: Get inside their garden if they have
one.
“Gardening is very difficult
for me,” says Dilts. “And some people love to do it. It’s nice to have
someone take care of these things when all I want to do is lie down.”
Caywood agrees. “Sometimes
it’s those little things that mean so much more than the big things
people go out of their way to do,” she says.
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Reach out...
...But also give space
Be patient
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Send a care package
Plan an activity
Silver linings exist
