Think before you speak. That’s a good maxim anytime you’re talking to a loved one, but it matters even more when your friend or family member is facing a cancer diagnosis says Dr. Thomas Smith, professor of oncology at Johns Hopkins University School of Medicine and director of Palliative Medicine for Johns Hopkins Medicine and the Kimmel Cancer Center. "Unless you’ve heard the words ‘you have cancer,’ most of us don’t understand the state of fear and anxiety that puts people in,” he says.
You already know that support matters. But don’t assume all support is created equal: Research shows that family and friends provide the most helpful emotional support, while patients tend to lean on health care providers for informational and decision-making support, according to a study in Psycho-Oncology.
Want to support your loved one without making a faux pas or unintentionally hurtful comment? Consider these conversational rules of thumb.
Do Speak Up
What will you talk about now that your loved one’s fighting the big C? Cancer, probably. But don’t assume that’s the only topic on the table. “After you leave the hospital, you’re trying to get some sense of normalcy again, and you just want to hang out with your friends and hear about their lives,” says Shin Lim, a professional photographer whose brain cancer was diagnosed in 2011. Though she was happy to share details and updates about her treatment when asked, Lim cherished the visits where her friends didn’t focus entirely on the cancer. “It was nice to see them and hang out, to not necessarily talk about me the entire time,” she says.
Talking about everyday events isn’t only a break from focusing on the diagnosis — it’s a reminder that there’s life beyond the treatment room, says Linda Mathew, LCSW, a senior clinical social worker at Memorial Sloan Kettering Cancer Center. “From what I’ve noticed in years of practice is that patients want their friends to just be their friends,” she says. “They don’t want the cancer to control and monopolize every minute of conversation or define who they are as a person.”
Do Tailor Your Talk
Keep in mind that fatigue is a common side effect of many cancer treatments, says Dr. Smith. So asking your friend to fill you in on every scan, blood draw and diagnostic detail may be more draining than restorative. “I always tell friends and family members to ask the patient directly: ‘What’s the best way I can support you?’” says Mathew. For some, that might mean attending treatments and chatting in person. Other patients might start a blog (such as CaringBridge) and ask friends to read updates and share comments there, to spare them the endless task of sharing updates individually.
Deborah Michael, a pediatric occupational therapist and founder of North Shore Pediatric in the Midwest, has always loved chatting with friends — and her diagnoses of non-Hodgkin's lymphoma in 2016 and Central Nervous System lymphoma in 2017 didn’t change that. “But talking on the phone is exhausting when you're taking medications and doing all these procedures, biopsies, chemo and all this stuff,” she says. She finds talking by text and messenger less tiring these days, and appreciated the loved ones who asked about her communication preferences instead of immediately ringing her by phone. “I love to hear from friends, but this way if I want to take a break, I can, and it’s no big deal,” she says.
Don’t Offer Advice
Dr. Google isn’t the best source of reliable info when it comes to cancer, yet it’s where most loved ones turn, says Dr. Smith. "Unless they're a trained cancer professional, or have access to a very reliable source like an oncology book that's really up to date," blind spots are almost inevitable, he says. "The types of treatment and different treatment options expand almost exponentially each year, so unless you're really involved in the field, your knowledge may be five, 10, 20 years out of date. And in that case it's not helpful."
Advice can be especially draining or even offensive when it stems from beliefs in unscientific remedies. "People try to help in their own ways and some people feel like they need to fix things," says Lim, who has had her share of people giving advice on how to cure cancer with herbs, meditation, or dietary tweaks. "I totally appreciated the intention, but after a while it got a little exhausting." Remember that your loved one’s medical team has years of training and expertise under their belt. Rather than stir doubts or anxiety with “helpful” second-guessing, ask your friend if there are specific ways that you can support his or her treatment.
Do Stay Optimistic — But Not Dismissive
When Michael was first told she had non-Hodgkin's lymphoma in August 2016, she decided almost immediately that she wouldn’t indulge morbid comments. So she was floored when friends asked things like “What’s your prognosis?” or made off-hand remarks like “I read there’s a 70 percent survival rate.” “I told them, 'I will never speak to you again unless you think about what's coming out of your mouth,’” she says. “If they were going to be so ridiculous, I didn’t even want to communicate with them.”
Advance care planning, hospice care, prognosis rates, and death are topics no one should bring up until the patient has shown they're ready to discuss it, says Dr. Smith, himself a cancer survivor. Put yourself in their shoes – would you want to talk about your will when you're trying to power through treatment? "You are their friend, not their health care provider," he says. "When I'm thinking about what my odds are, what are the best types of therapy that I have available to me, I don't need somebody saying, 'Oh, hospice is great! Make sure you have a will! Make sure you figure out how to be buried in a Jewish cemetery!'"
Still, in your quest to not be morbid you want to be careful not to tilt too far in the other direction. Rare is the cancer patient who can stomach a Pollyanna during chemo treatments, says Jennifer Ladisch-Douglass, a lawyer who was given a diagnosis of breast cancer in 2014. “People would say things all the time like, ‘Oh, it’s just breast cancer! You’ll be fine!’” she says. They’d point to cheerily optimistic breast cancer awareness campaigns, which seemed to minimize her feelings and fear. “Some people act like we’re all going to wear pink ribbons and go on a run and everybody will be fine, but they don’t really see the reality of it,” she says. “Breast cancer is cancer, and it’s deadly, and it’s terrible.”
Do Avoid Judgment
People may have their theories about how someone’s smoking habit contributed to their lung cancer or how they might have dodged the diagnosis if they’d only dropped 50 pounds. They should write down those ideas — and throw that paper in the garbage. “Shaming a cancer patient over their lifestyle choices can be very harmful — and is often scientifically inaccurate,” says Dr. Smith. “The worst part of a diagnosis can be when people feel psychologically like they’re responsible for their cancer. And even if there is some causality to one’s own habits, it’s not helpful after the fact to point it out.”
Cringe-worthy case in point: “I think my own mom said something like, 'It's because you always microwaved your food,’” Lim recalls. And though she knows the comment was ridiculous, it still stung. If a loved one is looking for your help on how to get healthier (say, asking for a great smoothie recipe or tips on picking out walking shoes), go ahead and help out, or even offer to accompany them on their journey to an active lifestyle. Otherwise, stay mum.
Don’t Compare Outcomes
That horrifying anecdote or miraculous recovery you heard about? That’s best kept to yourself. “Cancer patients often regale friends or even strangers sharing stories of their fourth cousin once removed who got cured with some treatment 25 years ago or their neighbor’s cousin’s friend who died some excruciating death from cancer,” says Dr. Smith. Those anecdotes are rarely helpful, he says.
“People gather those stories because they want to be helpful, to be a cheerleader, to share,” says Mathew. “They don’t realize that more information — even positive information — is overwhelming for the patient.” Instead of unleashing a deluge of outcomes, focus on affirming, again and again, that you’re available if they want to talk or if they need help. “Even if you think it’s understood, be explicit,” Dr. Smith says. “I’m here for you if you want to talk, but I respect that it could be a difficult time. I’m here for you, period.”
Do Keep the Conversation Going
"Once the initial crisis is over, many friends go back to their normal routines,” says Ladisch-Douglass. “But you're not 'done' when chemo's over or when radiation's over. You still go to the doctor regularly, you still have scans and exams and medications. It drags on for years." The current phase of her own treatment is expected to last between five and 10 more years, and she’s grateful for the friends who remember to check in on her periodically — long after the initial shock has worn off. “We still need a lot of help and emotional support, though no one may be thinking about it,” she says.
Even after a friend or loved one is in remission, the cancer may leave its mark on them — and what he or she wants to talk about. “I warn my cancer patients that when their hair grows back, people will think they’re now exactly the way they were before, when in fact so much has changed,” says Dr. Smith. “They may have a very different perspective on life and what’s important.” This is another area where following your loved one’s lead on what to talk about can make a world of difference in how supported and understood they feel, he says.