The worst reaction I got when sharing news of my breast cancer diagnosis and impending double mastectomy last year was from a neighbor, who texted me this awkward but well-meaning flub: “Well, at least you’ll look even skinnier now!”
It’s since become just an amusing anecdote - faint background noise through which the many supportive, loving reactions that I prefer to focus on are filtered.
Some of the best: The friend who called or texted me every day to check in, even if it was with just a heart emoji; the one who said, “that sucks and makes me so angry”; the one who left homemade hummus with warm bread on my doorstep the day I returned home from surgery, ravenous; the one who promptly organized an online meal train, without ever being asked, and the many who signed up and delivered to our family such thoughtful, delicious dinners that the memory of them still makes me tear up with gratitude.
And then there was the friend who lived a few states away and who, just a couple years out of her own double mastectomy, came to town without being asked and spent the day with our then-9-year-old daughter — to distract her, to spoil her and to care for her while I went to my first, very nerve-wracking, post-surgery appointment.
So how did everyone know what to do? Sometimes it came naturally; sometimes the knowledge was hard-won. Other times, it’s because they asked, “What can I do?” and I somehow figured out what to tell them.
But it’s not always so easy for people in the midst of a crisis to say what they need — or to even know, for that matter.
“Probably every woman talks about this at some point over the course of her cancer treatment,” says Mary Jane Massie, M.D., a psychiatrist with Memorial Sloane Kettering Cancer Center in New York City, where her focus is women with breast cancer. “I think the offer to help is a statement of love and affection — so take the affection — and know it’s OK to say, ‘this is kind of way too much,’ and ‘I don’t even know what I need.’”
Massie adds that going through a crisis such as breast cancer is how many people learn what their friends are really made of. “Sometimes the people who we thought were peripheral to us turn out to be the kindest, most helpful and most thoughtful — and our so-called friends turn out to be the people who say, ‘if you need anything, I am totally there for you, call me day or night,’” but are then never actually available when push comes to shove.
Some women so dread that disappearing act that they opt to keep news of their diagnosis to themselves. “They say, ‘I realize if I don’t tell people I won’t get support — but if I do, then I have to risk being very disappointed in them,’” Massie says.
According to the book How to Be a Friend to a Friend Who’s Sick, which longtime author and activist (and founding editor of Ms. magazine) Letty Cottin Pogrebin wrote following her own struggle with breast cancer, knowing how to be a good friend in tough times isn’t always instinctual.
“I’m sure you already know how to ‘be friends’ when it means catching up over lunch, sitting side by side at a ball game, or texting each other about a movie,” she wrote. “But when a pal or loved one falters physically or mentally — when they’re hobbled or hurting, when your role in the relationship is no longer easy or obvious, when your interests and exchanges are not entirely reciprocal, and your once-easy conversation tips jarringly toward matters of crisis and pain — you may have to find new ways of being together, new means for you to be helpful, and new words to keep things real.”
To gather more specifics, in honor of Breast Cancer Awareness Month, I decided to take a page from Pogrebin’s book, by crowdsourcing for some advice from women who have gone through it — both friends and acquaintances, as well as women in private Facebook support groups I belong to, about what to say and do (or not) when a friend tells you she has breast cancer.
But try to think of the nuggets of wisdom below as suggestions — not as edicts or threats designed to freak you into silence. Everyone is different, after all, and most people just want to know that you’re there, and that you care. As one survivor told me, “Personally, I worry that the more 'instructions' we give people about what not to say will scare them from saying anything. And THAT is the worst thing you could do.”
Which brings us to our No. 1 bit of advice.
It seems basic. But perhaps the most common request from women I spoke with was to please not vanish — something many people seem to have experienced upon sharing their diagnoses with others (myself included). Sometimes it’s because they don’t know what to say. Sometimes it’s because a friend’s cancer is hard for them — whether they’ve been through it before with a relative or just don’t have the constitution required to be a support system.
“I can excuse saying the wrong thing — my situation sucks, and I wouldn't even know what to say to me, either,” one woman noted. “What I cannot excuse is the disappearing act that many friends do when you get a cancer diagnosis.”
One of the best things you can do as a friend goes through treatment, then, is to simply stay in touch. “Just a quick checking in on text message, on a regular basis — ‘Hi how are you?’ and ‘Just thinking about you’ — can do so much,” noted one woman. “If you want to respond you can. If you don't, you still know they cared enough to check in.” Added another survivor, “Send notes and texts of encouragement just to let me know that I am not forgotten. It is a lonely battle.”
As for the one who has breast cancer, Massie suggests trying to be understanding, as hard as it may be, even towards ill-behaved friends.
“Plato said, ‘be kind, everyone is fighting a hard battle.’ So it’s pretty easy to say, ‘that darn friend, she just walked away, I don’t know why she walked away, I thought I knew her but I guess I don’t.’ We mere mortals have reasons for what we do and what we don’t do,” she explains, “and sometimes we just can’t do it.” So try to look at it as a lesson, she suggests, about who you can count on and who you can’t.
Other despised variations: “Oooh free boob job!” “Well, at least you’ll have awesome new boobs!” “You’ll be able to go topless on the beach with your new breasts!”
As one friend told me, “Although I laughed over some boobs jokes and made a few myself to take off some of the pressure, a mastectomy is not a boob job.” She stressed that it’s a “way more painful process with very different end results,” such as a major loss of sensation. “Moreover,” she said, “it’s not something I chose to do, as with people who elect to undergo plastic surgery.”
Noted another woman, “I’d gladly keep my saggy breasts that fed my children and helped in other ways than to get a boob job. I never wanted one. I was happy with my breasts.”
Others resent questions like, “What size will your new ones be?” which come with the assumption that they will be getting reconstruction, when many women, in fact, opt to go flat. And when they do, there’s a whole new set of unwelcome comments that can follow, like, “Don’t they make fake ones?” or “But how does your husband feel about it?” or “Of course you want reconstruction — you’re not old and you can still feel like a woman!” As that woman replied — to her breast surgeon — “I’m 58, and I still do feel like a woman.”
“Wow, guess that vegan thing didn’t work out so well, did it?” was another notable comment I received. It implied I was a fool, and maybe even somehow at fault for getting breast cancer despite my healthy lifestyle.
As another survivor said about these sorts of comments, “I was very understanding of the fact that people need to find a cause, to feel reassured it won’t happen to them. I also did some cause research, trying to figure out if I had brought this on myself, and in the end found it a sterile and self-shaming process.” Plus, she said, “in the end, what caused my cancer might not be what will cause someone else’s.”
Also not helpful, Massie says, referring to what she often hears from her therapy patients, is to be told — after you’ve chosen a doctor or a course of treatment — that there is a much better way. “Someone who says, ‘Why would you go there? You must go to my doctor, in fact I’ve called and made an appointment for you,’ doesn’t work. If your friend calls after a diagnosis and says, ‘I’m clueless, can you please give me the name of your doctor?’ that’s a very different story.”
It’s truly the opposite of comforting to hear, while grappling with the shock of diagnosis, about someone you knew who was killed by the same disease.
Examples of well-meaning but often maddeningly meaningless clichés: “Everything happens for a reason,” “God never gives us more than we can handle,” “Just be glad it isn’t worse,” “What doesn’t kill you makes you stronger.” Also unnerving to some women is being told, “You’ll be OK” or “You’re not going to die,” because how can anyone know? Some survivors have specific vitriol for any “warrior” or “battle” talk, like, “‘You’re so strong! You can fight it!’ What if I’m not strong? Yes I can fight it,” noted one woman. “But what if I need to feel like I don’t have to be strong, at least for a moment?”
“More important than what they say,” one woman told me, “is that they are prepared to listen.” And listening, especially to details, can sometimes help you offer specific follow-up help. “The best reaction,” another woman told me, “was my friend who just called every so often, asked how the chemo was treating me (meaning she had jotted down when my treatments were and kept track) and who took me for lunch or coffee and just let me talk, about cancer or anything else.”
Noted someone else, “I found it very therapeutic to talk about the whole process, and friends who patiently bore with me and listened to the nitty gritty of my lab results and surgical options were the most helpful.”
Also, if it doesn’t feel too intrusive, ask questions. “I love when people ask me specific questions about my treatment — how many infusions will you need? What type of chemo is it? Do you have any side effects? Even if they don't know anything about cancer, it helps to talk about it clinically and takes some of the awkwardness and ‘I'm so sorry, I'm so sad for you’ away,” one survivor shares. “I don't want pity. I like to talk about the productive things we are doing to fight it.”
It’s easier to ask forgiveness than it is to get permission.