What not to say to a cancer patient
Andy Jacobsohn/Staff Photographer
Dr. Wendy Harpham, an author and speaker, was diagnosed with Non-Hodgkin's lymphoma in 1990 and has been in remission for three and a half years.
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By MELISSA T. SHULTZ
Special Contributor
Published 04 April 2011 05:33 PM
Three little words kept me from sharing my feelings with family and friends until long after my cancertreatment was done:
“You’ll be fine.”
Though well-intended, the words were conversation-enders, and made me feel guilty for being sad and frightened.
“Cancer is the boogeyman,” says Walter Baile, a professor at the University of Texas MD Anderson Cancer Center in Houston and director of their ICare program, an online resource aimed at helping improve communication between cancer patients, their families and their medical team.
“More than any other disease the word cancer scares us to death and evokes thoughts of death,” Baile says. Our reaction to such frightening or bad news, is almost like a reflex. “We try to counteract our fears by reassuring others and saying things such as, ‘you’ll be fine.’”
Talking about cancer can be painful and awkward for both the patient and the well-wisher. Here’s advice from cancer survivors and medical professionals on what not to say to someone with cancer, as well as helpful alternatives.
“My friend died of cancer”
Dr. Wendy Harpham, 56, doctor of internal medicine and mother of three from Dallas, learned she had non-Hodgkins lymphoma in 1990. As both a patient and a physician, cancer tales have been the narrative of her life for the last 21 years.
“Patients don’t want to hear other people’s bad cancer stories — and sometimes not even good stories — because they’re focused on themselves. It can make them feel badly if you set the bar too high with stories about how well someone did during treatment.”
Skip Rogers, 50, of Plano, learned he had prostate cancer in 2008. His theory about why people tell these stories? “I think maybe they’re trying to connect with you. In some way they’re saying they’re sorry but don’t know how to do it.”
Mevelyn Mendoza, 63, of Garland, has survived several cancers. They all began in 2002, with her diagnosis of colon cancer. “Someone told me a friend had colon cancer and it came back and she passed away. I said, ‘Oh I wish you hadn’t told me that!’ They seemed shocked at my response, said they were sorry. I had to tell them it really hurts to say something like that when I am in the middle of this.”
“You’ll be fine — a positive attitude is all you need”
When you first hear about a cancer diagnosis, says Harpham, it’s normal for both the patient and family members to be in shock, to be fearful, and confused. Harpham went through all these feelings.
“In 1992 I had to close my solo practice to receive more cancer treatment, which meant closing the door on my life-long dream and facing a worsening prognosis.” When people told her she needed to be positive it only added to her stress and closed the door to talking about her feelings authentically. “It also put a layer of blame on me: If I don’t get well, it will be because I didn’t have a positive enough attitude,” she says.
So what’s the psychology behind statements like this? Simply put, “Our desire to control the uncontrollable is unstoppable,” says Dr. Marguerite Lederberg, a psychiatrist at Memorial Sloan-Kettering Cancer Centerin New York.
When people told Rogers he’d be fine, it made him feel “a little dismissed. Like it’s not a big deal, don’t worry about it.” For Denise McCrorey, 58, a two-time cancer survivor from Plano, she says it made her think, “So you have special news from whom? Where’s your hotline, and can I get on it?”
Of course, not everyone interprets things the same way. Mendoza was OK with reassurances of “You’ll be fine.” She says it spoke to the inner fighter in her. “It made me stronger.”
Dan Yaklin, 61, agrees. When his tonsil cancer was diagnosed two years ago, he was more bothered by his first physician’s statement that he’d need a feeding tube and would lose weight during his radiation treatment. “I try to look at the bright side of things.” After getting a second opinion, he says, “In the end, I didn’t lose one pound or need that feeding tube. I was pretty determined.”
“Call me if you need anything.”
Most experts will tell you that though it’s offered with good intentions, saying, “Call me if you need anything,” is about filling a void when someone doesn’t know what else to say.
McCrorey says it’s tricky to navigate the issue of need. “I realize now that not everyone knew what I needed, but neither did I.”
The most helpful offers, she says, were from friends who took charge, who took the responsibility off of her.
What you should say
“When someone is very sick,” says Lederberg, “the structure of the whole family feels unstable, as if all the windows in the house started rattling.”
Though it’s counterintuitive, Lederberg advises that when you learn about someone’s cancer, don’t say the first thing that comes to mind – try to reflect the patient’s pain, not yours. Say something that encourages them to share their feelings.
For example, try starting a conversation with, “I know you’re going through something very difficult.” Then stop and listen — listen to what they want at the moment, what they feel at the moment, without judging, or telling them you’re frightened or about someone else’s cancer story.
While you’re listening, what if they tell you they are anxious? You can validate what they’re feeling and link a hopeful message to it. For example, if they say, “I’m scared I’m going to die,” try responding with, “I’d be scared too – but the doctors are planning a treatment for you, and we are going to get you through it.” If you are a close family member, you might also ask, “What is the thing that scares you the most?”
Still, sometimes, even if you’re listening carefully, a patient may not always share their true feelings. Many treatments have the side effects of moodiness, fatigue, and sleeplessness. Family members often feel helpless and suggest patients be more physically active or to avoid all stress.
“The truth is,” says Baile, “there are many unavoidable stresses of cancer treatment. It’s not true that people can cause or bring back their own cancer because they are stressed.” If they seem to be stuck in a phase for an extended time, ask if you can go with them to their regular doctor’s appointment and then ask the doctor if this is normal. “The doctor can put the behavior in the context of the illness,” he says. So too, can support groups.
As for offering to do things for the patient, avoid the general (“Let me know if you need anything”) and go for the specific — with one caveat: “It’s very important to help patients regain a sense of control,” says Harpham.” You can accomplish this quite simply by asking before doing.
Melissa T. Shultz is a Dallas-area freelance writer.
dmnshultz@gmail.com
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