This year, more than 2 million Americans will hear the scary words: "You have cancer."
Let's say it's someone you know. You may be wondering, What's the best thing to do or say? … Or not say?
All too often survivors and advocates say even well-intentioned people get some fundamentals wrong.
People might, for example, want to put a happy face on the bad news, or try to connect by offering stories of others with cancer — which can feel irrelevant or hurtful, says Kara Kenan, a spokesperson for the National Coalition for Cancer Survivorship, who recovered from her own bout with breast cancer a dozen years ago.
"The number one complaint is when other people who are well-meaning and sharing, 'I know what you're going through; my grandmother had cancer … and, oh, by the way, she died,'" Kenan says.
What's worse though, is when people disappear without a word, perhaps because they don't know how to respond. Chelsey Gomez, a 7-year survivor of Hodgkin's lymphoma from Deland, Fla., experienced this with some of her closest friends and even the younger brother she doted on.
"I cried more about that than the cancer a lot of times because I just felt so alone," she says.
The phenomenon is so common that many cancer patients call it "cancer ghosting," and several cancer survivors told NPR was more painful than the treatments themselves.
Explore Life, after diagnosis, a series on living with cancer today.
So what are some good rules of thumb for those trying to be supportive without inadvertently adding to the person's burdens?
Here is some advice compiled from some patient advocates, doctors and survivors:
Do reach out
People often feel especially tongue-tied responding to someone's cancer diagnosis, in part because they're afraid to intrude or offend, or because it raises old trauma or new scary possibilities: What if they die? Could I get cancer?
"All of these feelings come up for people and they don't know how to deal with it, so how they deal with it is running away," says social worker Carissa Hodgson, who directs community support programs at Bright Spot Network, a support group for parents with cancer. It's important to manage those anxieties and recognize that every experience is individual.
And remember, if it's scary for you as the friend or family member, recognize the person with cancer is facing a bigger fear. And they need connection and presence – even if you don't know what to say, just being there makes a difference, many experts and survivors say.
Kenan, the spokesperson for the cancer survivors group, was 35 and a newlywed with a 4-year old daughter when breast cancer reordered her life. Some friends disappeared, but others stepped up, she says.
"Friends from my childhood, from my adult life, from all over the country at different times reached out, and for me that made a huge difference," she says, in terms of keeping her from feeling somewhat normal, or at least not alone.
In fact, social isolation is one of the most common, underappreciated side effects of having cancer, and can affect not only a person's mental health, but their ability to fight disease.
Ask and listen instead of talking
It can feel very difficult and scary, broaching the topic of someone's diagnosis, says Kenan, which might be why some people opt to disappear.
Knowing the person can help guide you in understanding how they generally might handle difficult topics. But if not, or if it still feels awkward, Kenan says it's best to acknowledge the tension and simply ask whether the patient wants to talk about it. If they do, she says, just listen: Allow them space to vent.
"Be prepared to be there if they do want to talk about it," she says, which may mean sitting with their pain, anxiety, sadness or any other uncomfortable emotions that the person might express – without offering commentary or comparison.
She says, simply: "That sucks" suffices, she says, as a response that conveys uncomplicated sympathy and understanding.
"There's a difference between listening to respond, and listening to just listen," says Kenan who, a dozen years later, is cancer free and lives in Wilmington, N.C.. She now teaches others how to communicate and support cancer patients by teaching professional courses for "cancer coaches," who help patients navigate various aspects of life during and after treatment.
Skip the comparisons and platitudes
Sympathetic people often want to convey their understanding by sharing their own stories or unsolicited advice, Kenan says, but that can feel like you're overlooking the person and the particulars of their experience. Peoples' experiences of cancer varies a great deal, so bringing up stories of others is not only irrelevant, it could stoke fears for the patient.
Kenan acknowledges it is uncomfortable to hear someone you care about having a hard time, and there is a natural impulse to want to make it feel better. But offering rosy platitudes like "you'll beat this" might land entirely the wrong way.
"It makes me feel like some of the darker stuff that I'm dealing with inside isn't OK," Kenan says. She could sense the person's eagerness to white-wash her pain, which made her feel more alone dealing with a situation.
Sometimes she wanted distraction, and to feel normal again, she says, but she also needed friends she knew could help her process the most difficult emotions.
Be specific in your offers of help
"Let me know if I can do anything to help," is one of the most common, well-meaning responses upon learning of a person's hardship, but it's actually not very helpful, because it leaves the burden on the patient to either ask, or to think up a list of ways the person can help, says oncologist Arif Kamal, chief patient officer with the American Cancer Society.
"Showing up in really specific, practical ways and knowing what you're willing to do and just offering that, you're way more likely to get someone to take you up on that than if you just say, 'Let me know how I can help,'" Kenan says.
Food is a great example of a favor that can go wrong. Imagine: Five friends might show up the same day with lasagnas in trays that must then be washed and returned. Lasagna might not meet the dietary requirements of the patient, or perhaps their kids don't like it.
"I'm picking up a pizza for my family, do you still like pepperoni and could I drop one off," is a much more specific offer that requires little response or coordination can be far more effective, Kamal says. It also opens the door for the person to come up with an alternative: "Not tonight, thank you, but next Tuesday would be lovely."
In some cases, technology can be of assistance. Kamal says the American Cancer Society is looking into developing an app-based system that will allow cancer patients to connect with neighbors willing to volunteer to help them, by driving them to appointments, for example, or babysitting children so they can rest.
Kenan says she loves apps like Meal Train that allow users to select from a menu of dietary needs, preferred delivery times and methods, so families get exactly what they need.
Keep up support after treatment ends
More people are surviving cancer because of better medicine. But Kenan says it's important to remember that side effects and other challenges can persist long after the cancer clears.
"Everybody celebrates, they ring a bell," she says, of the typical fanfare in treatment centers to mark the end of treatment. "Everybody's like, 'Yes! You beat it!,' and then they go back to their normal lives. And that survivor is like: 'This isn't over for me.' Their whole life has changed and they are going to continue to need support."
Continued support, however, does not necessarily mean meal trains have to continue indefinitely; often it just means remembering to honor how cancer left its mark. Many survivors say they need to continue to be able to talk about their experience, or process how it affected them.
Kenan says one of her favorite forms of support comes from friends who tell her that they got their cancer screenings, or who continue to advocate for research.
"That is so powerful to me as the survivor to see other people stepping up for their own health and stepping up for others," she says. That feels to her like love.
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