Breast Cancer Etiquette. What to Say & What Not to Say
What you should — and shouldn't — say to a breast cancer patient
Repost-ed Editor's note: We're bringing back this popular piece from October 2014 for Breast Cancer Awareness Month and because, well, good advice is timeless.
When a doctor told me five and a half years ago that I had invasive lobular breast cancer and would probably be losing both breasts (and who knows what else), I thought it was the most wretched thing I’d ever heard in my life. At least I did until I started sharing my diagnosis with others and was told things like “Yeah, my aunt had that and she died a horrible death” or “Look on the bright side, you could get hit by a bus tomorrow!”
Are comments like this meant to be hurtful? Absolutely not. But they can be, especially when someone is at the shaky, shell-shocked start of their “cancer journey,” a phrase I heard so often after diagnosis I began to wonder if breast cancer came with a free cruise.
“People make comments that are well intended, but often come from a place of awkwardness, discomfort, and even fear,” said Leslie Heron, a nurse practitioner with Fred Hutchinson Cancer Research Center’s Survivorship Program, who’s cared for and supported people with cancer for much of her life. “I try to remember they mean well, even if they say something insensitive.”
Breast cancer patients know that their loved ones are worried, too. And that none of us is exactly profound when we’re confused, stressed and scared. Wondering what NOT to say to someone who’s received a breast cancer diagnosis or is currently in treatment? Here’s a short primer, along with a few suggestions on what you might say instead:
They’re just boobs. It’s not like you need them; your kids have all grown! No, breasts are not essential to survival (except perhaps for newborns), but they are part of our bodies and, for some women, they can be much more: a huge part of their femininity, their sexuality, even their identity. Losing one or both breasts via mastectomy can be devastating — it's both physically and emotionally painful — and the aftermath can impact your self-image, your sex life, your relationships with others (including your children) and your day-to-day life (clothes don’t fit right, for instance). Mastectomy can also trigger both mobility issues and chronic pain and if some or all lymph nodes are removed at the same time (a common practice), patients also have to deal with lymphedema. More pain, more chronic problems. Minimizing mastectomy by telling someone they’re “just losing boobs” implies they’re being shallow. They’re not. You’re being an insensitive clod. What do you say instead? I am so sorry that you have to go through this. I know mastectomy can be very difficult. I’m here to support you.
It’s just hair. It’ll grow back in no time! Think of all the money you’ll save on shampoo! Believe it or not, remarks like this are intended to make cancer patients feel better. Instead, they come off as glib or callous because the folks who say them have never lost their hair to chemo, don’t have a clue how long it takes for hair to grow back and would never dream of shaving their own head in solidarity. Here’s the deal: hair, eyelashes, and eyebrows (yes, breast cancer patients often lose them all) don’t hold the same value for everyone. But for some BC patients, losing yet another aspect of their femininity, their individuality, and for some, their defining look can be extremely difficult. What to do/say instead? Would you like to talk about the hair loss? I can’t imagine how hard that must be.
You get a free boob job! I don’t know a breast cancer patient who hasn’t heard some version of this gem. Sure, people who say this are often just trying to put a positive spin on a bad situation, playing up what they feel is the “fun” part of breast cancer (as if any part of cancer could be “fun”). But others simply don’t know the difference between augmentation (putting an implant behind breast tissue) and reconstruction (rebuilding a breast from scratch using implants and/or chunks of tissue from other parts of your body). Whether it’s ignorance, insensitivity, or a bad case of foot-in-mouth disease, telling a breast cancer patient how lucky they are to be getting “bigger, better, perkier boobs” is right up there with telling a sarcoma patient how lucky they are to lose a leg because now they can become a “bladerunner.” Not cool. What to say instead? If you decide to do reconstruction, I’d love to help you during your recovery. What’s your favorite comfort food?
What are your odds? What stage are you? Are you, like, dying? I got the “odds” question a lot when I was first diagnosed and at first, I dutifully told even casual acquaintances what my oncologist had told me. After a while, though, I stopped. If someone asked what stage I was, I’d tell them Stage WTF because, truly, that’s how it felt. Or I’d just tell them it was none of their business. “There’s a very narrow group of people who deserve to have some idea about this so they can help support you,” said Dr. Julie Gralow, breast cancer oncologist and clinical researcher at Fred Hutch and its treatment arm, Seattle Cancer Care Alliance. “But for the average friend or more peripheral person, it’s up to the cancer patient to divulge what they want. They’ll let you know if they want to share.” What to say instead? Tell me about your treatment plan. When is your next doctor’s appointment? I can drive you.
It’s your fault. Did you ever use deodorant? Forget to have kids? Take birth control pills? You brought it on yourself. If you’re a member of the cancer club, you’re probably already beating yourself up for something: the super stressful job you didn’t quit or those 20 pounds you forgot to lose. The last thing you need is extra blame and shame from some self-righteous blowhard who thinks they’ve cracked the code on your cancer. Or simply wants to forward some pet theory (no Gwyneth, bras do not cause cancer). The bottom line: breast cancer strikes women who are young and old; short and tall; thin and heavy; meat-eaters and vegetarians; couch potatoes and athletes. Breast cancer even strikes men. Research has given us clues about how to reduce our risk of the disease but that’s about it. Don’t contribute to a patient’s burden by telling them what they should or shouldn’t have done to prevent the disease. “Shoulding” all over a cancer patient is never helpful. What to say instead? I am so sorry to hear about your diagnosis and am here for you during treatment. Is Tuesday a good night to bring by dinner?
You can’t be sick, you look great. Are you sure you have cancer? I saw pictures of you on Facebook and you looked fine to me. This one is really horrible, especially for metastatic breast cancer patients who will be in treatment, and enduring its side effects, for the rest of their lives. Just because a breast cancer patient (or anyone living with an invisible illness) doesn’t “look sick,” i.e., bald, thin, pale, dressed in PJs and possibly pushing around an IV pole, doesn’t mean that they’re not very sick, indeed. Metastatic patients are terminal but commonly hear this because their lower-dose, long-term treatment may not cause hair loss. It may, however, cause nausea, severe bone pain, gastrointestinal issues, skin sloughing and constant fatigue, on top of whatever pain the cancer itself is causing. So a night out with friends might be followed by three days of bed rest (a much less common Facebook share). Still, this phrase tumbles out of peoples’ mouths so often, you can actually buy a T-shirt that says, “I don’t look sick and you don’t look dumb, yet here we are.” What to say instead? How are you feeling this week? How about I come by on Saturday and clean your house?
Get over it! You need to let go and just move on! Quit dwelling on it. This comment is more about the person saying it than about you. They want you to move on because cancer is super scary and they don’t want to think about it anymore. Unfortunately, it’s never really over for many breast cancer patients. We have to keep thinking about it and/or dealing with it for a number of reasons. First, treatment is brutal and can cause lots of collateral damage: "little" things like lymphedema, neuropathy, fatigue, joint pain, anxiety, depression, sexual dysfunction and even other cancers. Second, reconstructing new breasts can involve multiple surgeries over months or even years. No, it's not treatment, but it's still major surgery and it's still traumatizing. Finally, just because someone’s out of treatment, it doesn’t mean they’re out of the woods. They need to go back to their oncologist every few months for checkups and tests (hello scanxiety!) because there’s always a chance the cancer will return. For metastatic patients, there’s no moving on – ever. Cancer and its treatment will be part of their daily reality until they die. What to say instead: I’ve heard that cancer changes everything. Help me understand what you’re going through.
There’s no question cancer is frightening – for those going through it as well as their family and friends, some of whom may fade away because they’re afraid or feel awkward or simply don’t know what to do or say. If you know someone who’s been diagnosed with breast cancer, don’t worry too much about saying the exact perfect thing. There really is no perfect thing to say, except, maybe, “I love you, I’m here for you and I’m bringing you chocolate right now.” The important thing is that you’re willing to listen, to learn, to help, and to not be, well, a complete boob about the whole thing.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org.