9 Things Not to Say to Someone Diagnosed With MBC
When a friend or family member is diagnosed with metastatic breast cancer (MBC), they have a lot to deal with. Not only do they face the realities of their cancer spreading from their breasts to another organ or part of the body, but they often confront insensitive, inquiring and personal questions. Most aren’t meant to hurt or insult; but they can. Even the well-meaning don’t always get it right.
Words can hurt. Don't let them.
“I just won't and can't focus on being hurt by a misplaced word or awkward sentence,” says Judith Mayer, patient advocate and administrator for Breast Cancer Straight Talk. “Everyone is doing the best that they can. They are saying the wrong things in an effort to connect. So, I focus on the connection part.”
If that’s you—just trying to connect and make a friend or family member feel better—remember these nine things you should try not to say to someone diagnosed with MBC and some alternatives:
"My mother/aunt/neighbor/friend’s cousin died from breast cancer."
Not helpful, say those with MBC. Everyone knows someone who has died of cancer, so why share discouraging news. Plus, everyone’s cancer is different.
“Let's face it; just hearing the words ‘breast cancer’ scares people,” says Mayer.” It reminds us all of our fragility, that we will not live forever, that tragedy strikes, and that none of us know the number of our days.”
Say this instead: “I can see how hard this is for you,” suggests Mayer. Key word being ‘you,’ not your aunt or neighbor.
"At least you got a free boob job."
Misconceptions abound for women who’ve had reconstruction. “As if a boob job is the consolation prize for having breast cancer,” says Jennifer Collins, who was diagnosed with Stage IV breast cancer five years ago. “It is particularly painful because when you find out you have cancer, the last thing you are worried about is vanity. Breast reconstruction is nothing like a 'boob job'. It is disfiguring, devastating, painful, and barbaric.”
Say this instead: “I’m so sorry you have to go through this.” A little bit of empathy goes a long way.
"I know how you feel."
You can be compassionate and caring without personal experience. But you probably don’t know “exactly” how someone else feels unless you have a similar diagnosis. “I don't think any cancer patient expects people to know the right things to say. We don't expect people to understand what we are going through,” says Collins, author of the memoir, The In-Between Is Everything.
Say this instead: “Help me understand what you are going through.” This shows them that your only concern is their individual experience.
"Are you really sick? You don’t look sick."
The look on the outside can be very deceiving, especially when it doesn’t involve hair-loss from chemotherapy, says Terlisa Sheppard, a patient advocate living with MBC for 19 years, with metastases to her bones, lungs, liver, spine, abdomen and brain. “There were times when I was too weak to take care of myself, but right now, I don’t feel sick on most days. Yet, she adds, “I do have some joint or bone pains that can completely stop me in an instant.”
Say this instead: “I understand you face some challenges. Tell me about them.” And then, truly listen, without offering unsolicited advice.
"When will your treatments end?"
The answer is: never. People don’t always understand that the cycle of treatments, exams, scans, and doctor visits for those with MBC is constant and forever. “I’ll be on some type of treatments for the rest of my life,” says Sheppard, who also suffers from resulting side effects.
Say this instead: “That sucks!” This exclamation may help take some of the pressure off your friend/family member who may feel she has to be positive at all times.
"Have you tried…….?"
Everyone seems to know what caused your cancer and how to cure it. “It is not that people don’t pray enough, aren’t positive enough, or eat enough healthy’ foods,” says Maimah Karmo, a 14-year breast cancer survivor and founder of Tigerlily Foundation. “MBC is a disease that happens regardless of age, race, geographic location, faith, lifestyle or family history. It is NEVER the patient’s fault,” she adds, or because “they didn’t beg, believe, change their diet, take enough supplements or think positive thoughts.”
Say this instead: “How can I support you?” Let her tell you what she needs from you.
"You’ve got this! Keep fighting!"
Such words imply “that I am not fighting hard enough,” says Alex Frenzel, advocate for the MD Anderson Advanced Breast Cancer Clinic. Frenzel has been living with Stage IV breast cancer since a recurrence in 2016 after 16 years of remission. “We all love the stories of people who ‘beat’ breast cancer because we need hope.” But, she says, the only way to truly ‘beat’ it is with “more research towards the ultimate goal of finding a cure to kill the beast.”
Say this instead: “You are not alone.” Because there’s strength in numbers.
"Maybe now you can go on with your life."
People want their sick friends to recover and move on. They don’t want to continue to hear about the latest scan, treatment or set-back. They want you to return to your normal old self, says Collins. “I truly believe people want to help you see the bright side. It is well-intentioned but misguided.”
Say this instead: “Are you up for my party? A walk in the park?....” Don’t stop inviting us, says Collins. “I tell my friends I don't want to be their 'cancer friend', I just want to continue being their friend.”
"We are all going to die someday."
Ummm…well, yes, but it’s important to remember that there are MBC survivors like Sheppard who live decades and studies show that women with metastatic disease are indeed living longer.
But Frenzel truly hates when people recite the cliché that anyone could get hit by a truck and die today. Her response: “Right now I have a big truck with a sad face bearing down on me and I am struggling to get out of the way. How about you?"
Say this instead: “That must be hard.” Simply acknowledging the fact that your friend or family member fears what the future might hold, is ironically comforting.
- MBC Patients Lifespan: Cancer Epidemiology, Biomarkers & Prevention. (2017). “Estimation of the Number of Women Living with Metastatic Breast Cancer in the United States.” cebp.aacrjournals.org/content/26/6/809