14 Things Women With Metastatic Breast Cancer Want You to Know
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.
For more stories about women living with Invisible Illnesses, check out our new series Life Interrupted: Living With an Invisible Illness.
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.
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.”
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.
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.”
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.
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.
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.
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.
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.
Supporting someone with stage 4 breast cancer can sometimes be as simple as shooting off a text. “I appreciate when I haven’t heard from a friend in a while and they call or send a text to see how I’m doing,” says Caywood. “It’s so important to me to know that they’ll be there if I need them.”
Don’t worry about saying the wrong thing, either. “I’d rather have someone say the wrong thing than say nothing at all,” adds Hufnal.
...But also give space
“It’s often easier for me to debrief alone,” says Caywood. “I had a scare last year where I found out that a lump in my left breast had increased in size. To know that it was a possible threat was scary.”
But before Caywood shared the news with her family and friends, she felt she needed time to process it by herself. When you’re living with metastatic breast cancer, “the people close to you are affected too,” she says. “Sometimes I can’t handle everyone’s emotions all at once. So I have to deal with me first, building myself up and getting a better understanding [of the situation] before I can talk to the next person and manage their emotions in addition to my own.”
Try not to get frustrated if your friend forgets things here and there, as treatment can take a toll on both the mind and body.
After a mastectomy, radiation, and countless rounds of chemotherapy, Linda Adamson, whose stage 3 breast cancer progressed to metastatic when she was 48, says she’s most thankful when others are patient with her, since “chemo brain is real.”
Send a care package
“Right after I was diagnosed, my friends sent a series of hand-picked care packages to my house,” recalls Hufnal. “They gave me pajamas, diapers for my newborn son, household supplies, and cleaning products.”
The everyday essentials took a load off Hufnal, who lives in a four-story walkup in New York City and would otherwise have to lug shopping bags up to her apartment.
“It saved me time and energy,” she says. “I’ve never been so thankful for a roll of toilet paper in my life!”
Plan an activity
Just because someone has late-stage breast cancer doesn’t mean they can’t keep doing the things they enjoy.
“One friend would wake up early in the morning to go reserve tennis courts for us to play at later in the day,” Hufnal says. “He knew I’d only last about 15 minutes because I was so tired from my chemo treatments, but he wanted me to get outside and do an activity I’d always loved.”
If your friend isn’t up to a workout, consider signing the two of you up for restorative yoga class or group meditation instead.
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Silver linings exist
Hockensmith’s breast cancer recently came back for the third time. But despite its metastasis to her spine, she’s still able to see an upside in it all.
“It’s crazy to say, but my diagnosis was a blessing in one sense,” she says. When Hockensmith was initially diagnosed in 2010, volunteers from a local community center, which supports women with breast cancer, brought her cards in the hospital. She ended up hitting it off with the women and soon found herself working for them as an administrative assistant.
“I worked there for five years, talking to women with breast cancer, giving out free wigs and bras,” she says. "And that was really my silver lining in all of this. I’ve met so many wonderful people with this diagnosis, and I’ve been able to help them."