15 things not to say to someone with breast cancer
This year in the UK, more than 55, 222 - the vast majority of them women - will be diagnosed with breast cancer. Chances are, you know someone who is or will be in treatment, but it's not always easy to find the right thing to say. Even women who have breast cancer admit that, before their diagnosis, they weren't sure how to support others going through it, and may have inexplicably (and inevitably) said something offensive.
We spoke to women with various stages of breast cancer to find out what isn't helpful to hear - and what is:
Of course you want to believe the best, but this blanket statement can make the patient feel like her news isn't being taken seriously. "Each cancer is different and each cancer is horrible, so there's really no 'fine' when it comes to a diagnosis," says Rita Woker, who was diagnosed with Stage III breast cancer last year. And, sadly, a woman may not, in fact, be fine. No one - not even doctors - can predict with 100% certainty what a woman's prognosis is, regardless of the stage of her cancer. Even after a person finishes treatment and is declared NED (no evidence of disease) they are not totally out of the woods, and even asking someone if she is going to be OK can make them uncomfortable. "I get that people who care about you want reassurance, but doctors don't give us any guarantees," says Shelley Camhi, who recently underwent chemo and radiation. And asking about a woman's prognosis after treatment - or implying she'll be healthy for the long haul - forces the patient to think about the uncertain future, which can be scary and overwhelming.
This unwittingly implies that a person needed something terrible to happen to her to mature. "I don't think God looked down and said, 'I'm going to give Andrea cancer, to teach her some life lessons,'" says Andrea Chatard, who is in in remission after a second diagnosis. Along the same line, avoid saying that "God doesn't give us anything we can't handle." Not everyone is religious or spiritual.
It's intended as a positive affirmation, but a compliment like this can put the person in an uncomfortable situation. "I know people mean well, but I have to explain that the reason I look good now is that my cancer is stage IV metastatic [spreading] and incurable, and I've chosen to not do chemo - which is why I still have a full head of hair - to maintain a good quality of life as long as possible," explains Teresa*. And once she's shared the grim details of the diagnosis, she finds, ironically, she's in the position of needing to comfort the other person. Another reason to avoid appearance-focused comments: A woman may feel awful even if she looks healthy, and "you look great" could be misinterpreted as "I don't think you're as sick as you say you are."
It's human nature to want to make these connections, but every breast cancer is different - and for so many reasons. "Just because your sister or aunt or friend didn't have to do chemo and took supplements that helped her doesn't mean that's remotely the case for me," says Rita Woker. "So much goes into the diagnosis and treatment plan. I have a team of doctors - an oncologist, a geneticist, surgeon, nurses - making educated decisions, so I am not going to second guess my experts based on another person's experience." And although it may seem obvious, do not tell the story of your friend who died from breast cancer. "After my diagnosis, everyone I talked to had a story to share and nearly all of them ended with, 'She died, but I'm sure you can beat this.' It's not helpful at all," says April Grove Doyle, who has stage IV metastatic breast cancer.
Or, for that matter, wear an underwire bra or have breast implants. "These are all myths," says Susan Rahn, who was diagnosed with metastatic breast cancer and who co-founded TheUnderbelly.org, a site for women and men to share the unvarnished reality of living with the disease. "There is no good scientific evidence to show that that these products affect the risk of cancer," explains Cancer Research UK. Secondly, a statement like this implies that a woman has done something to bring this on herself. Fact: 60 to 70% of women diagnosed have no known risk factors (genetic or otherwise) for the disease, and many women with risk factors will not get breast cancer, according to the National Breast Cancer Foundation.
You may want to commiserate with a friend who's undergone a mastectomy, but even the biggest breast woes (i.e. back pain, difficulty exercising) have little in common with a woman who has had breast tissue surgically removed to treat cancer. "A couple of people told me they hated their large breasts and would welcome an excuse to get rid of them," says Beth Paul-Russell, who had a bi-lateral mastectomy after her diagnosis. "I chose not to do reconstruction, but I miss my breasts and believe the well-endowed women who made these comments would miss theirs too." Andrea Chatard, who elected for reconstruction says, "People would comment, 'On the bright side, your boobs won't ever get saggy' or they'd give me advice about their elective breast augmentation. A mastectomy and reconstruction is nothing like an augmentation. The expanders are painful, it takes a long time to adjust and it's a huge blow to your self-esteem."
Not only are these incredibly personal questions, but they force a patient to relive one of their most upsetting moments. "I don't want to go back to that time. It was terrifying and overwhelming and thinking about it can bring on a panic attack," says Shelley Camhi. Many cancer patients prefer to focus on the now and moving forward. "It depends on the relationship you have with the person, of course. I kept my family and close friends updated on the details," says Camhi. Bottom line: Take your cues from the patient - if she wants to share the details, she will.
The same goes for alternative treatments - don't offer unsolicited advice, particularly dietary tips. "Certain foods and supplements can interfere with a person's cancer medications and be harmful," says Susan Rahn. Turmeric, for example, can be dangerous because it interferes with several medications, including diabetes and blood-clotting drugs, according to the Susan B. Komen Foundation. And there is NO evidence that alkaline or acidic diet affects cancer. That's not to say that patients shouldn't try to eat healthfully during treatment, exercise or use treatments to relax, but they should first consult their doctor.
An open-ended offer seems well-meaning, but for an overwhelmed cancer patient, having to think of what you can do for them just adds to their to-do list. "Share specifically how you plan to help," says Teresa. "Offer to research, run errands, babysit. I had one friend who insisted I put her down as the emergency contact at my kids' school so that she can pick them up. Another friend said she would drive me to doctor's appointments during her lunch break."
Your friend/relative may indeed be a fighter - and you want to lift her up - but this kind of rah-rah refrain doesn't always make a person with cancer feel strong. "It doesn't resonate with everyone," says Melanie Childers, a cofounder of TheUnderbelly.org, who was diagnosed with Stage II breast cancer. "When I myself don't feel like a badass - even though I'd like to! - it makes me think, I guess I'm really not the fighter everyone thought I was," says Childers, who is a life coach helping women recover after cancer. It also inadvertently implies that women who can't beat cancer - because they are diagnosed with a terminal form - aren't fighting hard enough.
It's true that none of us know when our time will be up, but women with breast cancer - especially metastatic cancer - have a looming deadline that colours every day. "We are doing our best to live while knowing that cancer is actively destroying our body. The proverbial bus comment is dismissive and insulting, and most of us will tell you what you can do with that bus," says April Grove Doyle.
"Patients should be encouraged to feel all of their feelings, and we all cope in different ways. Telling us to stay positive plays down the serious situation we find ourselves in, through no fault of our own," says Melissa McAllister, a cofounder of TheUnderbelly.org. Being told you have cancer is like going through the grieving process, and friends and family should honor how a patient is feeling at every step of the way.
It's tempting to find a silver lining, but doing so inadvertently dismisses a person's experience and fears. "A cancer patient has no control over how medications affect her weight or hair loss, and these things shouldn't be a focus at all when she is trying to stay alive," says Melissa McAllister, who was diagnosed with invasive ductal carcinoma. Alternately: Don't belittle a person's hair loss by saying 'It's just hair.' "Losing my hair was actually more traumatic than losing my breasts," says April Grove Doyle.
For someone who is religious or has an established spiritual practice, this may be comforting. But for others, it could be construed as annoying, or make them feel like they're already dying. "I put my faith in science and the best doctors I could find, not religion, so hearing this is like nails on a chalkboard," says Shelley Camhi. Susan Rahn adds, "As a stage IV patient, it's highly unlikely a 'miracle' will occur, and to tell me this makes me feel like you think I've given up. It's irresponsible, especially when you don't know what someone's belief system is."
It's true that mothers must contend with the possibility they won't see their children reach adulthood - and they worry about how they'll fare during the treatment - but kids aren't the only ones affected by a cancer diagnosis. "Just because I don't have children doesn't mean that I don't have family members whom I worry and care about," says Rebecca Scheinkman, who has metastatic breast cancer. "I am scared every day about how my mother, father, brother, sister-in-law and young nephew will handle eventually losing me to this disease."
And the one thing you should say to someone diagnosed with breast cancer...
"It allows the person to say 'fine' and change the subject, or actually tell you how she is doing since you asked," says Amy Kates, who was diagnosed with breast cancer a few years ago. It also acknowledges that the person is going through something - you aren't avoiding the topic. And if your friend or family member decides to share with you, then really, really listen.
*Name has been changed to protect privacy
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