The Language of Survivorship

When Martha Carlson received a metastatic breast cancer diagnosis in January 2015, she felt immediate despair about the effect it would have on her family. She had just turned 50 and had three younger children — the youngest, 12 — and a husband at home.

Scared and heartbroken, Carlson felt a deep loss after learning her disease was terminal, with an average survival rate of 30-39 months, depending on the patient’s age. Unlike some other patients with the disease, Carlson responded well to therapy and remains on Herceptin (trastuzumab) and Perjeta (pertuzumab), which are used to treat HER2-positive cancer.

“I had to learn to balance my own normal going through life — raising my kids, having hopes and dreams, and not shutting off that part of myself because I have this diagnosis,” says Carlson, who lives in Brookfield, Illinois.

Part of that normalcy involves learning how to navigate relationships with family, friends, coworkers and acquaintances who may not understand what it’s like to live with cancer, whether that means surviving with no evidence of disease or remaining on treatment while they live with cancer.

WHEN WORDS HURT

A quick online search generates dozens of articles with headlines such as “The Things Never to Say to Someone With Cancer” and “12 Things to Say to Someone With Cancer.” It’s good advice, but not everyone takes it, much less seeks it. That can lead to eyebrow-raising comments from both loved ones and complete strangers.

“My dental hygienist was going over my history with me — I had to have four teeth removed. I’ve had a lot of dental problems from the cancer, and I was saying to her that I’m hopeful about a new medication coming out,” recalls Jane Biehl, who is living with myelodysplastic syndrome (MDS), a cancer that can occur when blood-forming cells in the bone marrow become abnormal. “And she said to me, ‘You already lived longer than they expected you to.’ Then she shrugged and blew it off. I was stunned. I said nothing.”

Like Carlson, Biehl, who lives in Canton, Ohio, will never hear the word “cure” for her type of cancer. She too remains on treatment and continues to hope for the next new drug that will keep her alive. Knowing that they will never be free of their disease makes coping with insensitive comments even more complicated than it is for survivors who do not need active treatment. They wonder how to respond to remarks such as “You don’t seem changed other than taking naps,” “You can beat this,” or “You look great.”

Survivors can be plagued with long-term side effects such as fatigue, cognitive issues, neuropathy, sexual dysfunction, fear of recurrence and financial toxicity. The physical and emotional effects don’t resolve overnight, and for those with chronic or metastatic cancers, they may never go away.

“Even now, people will say ‘I hope you get well’ or ‘I know you’re going to beat it — cancer doesn’t know who it picked,’” Carlson says. “I understand and remind myself of where it’s coming from. They love me and they are concerned, and sometimes it’s a bit of way to protect themselves. The problem with these statements is (that) it makes it hard for the person who is going through cancer to be honest about how they are feeling.”

Rather than shutting down, use the comment as a teachable moment, suggests Rick Bangs, a bladder cancer survivor and advocate who has worked with the National Cancer Institute, National Comprehensive Cancer Network, American Society of Clinical Oncology and Food and Drug Administration. “I always believe people want to do the right thing, especially when they ask questions,” says Bangs, who lives in Rochester, New York.

Cancer survivors should recognize that people are uncomfortable, he says, then frame the response based on the situation and stay focused on that.

For his stage 2 muscle-invasive disease, Bangs had surgery to remove his bladder and prostate but, unlike many patients, did not need chemotherapy. “Someone said to me, ‘You just had to have the surgery,’” he recalls. “In the context of the conversation, the word ‘just’ could have been construed as ‘boy, you got off easy.’ And she realized it could be interpreted that way. I didn’t get offended in the least. From my own experience, (I know) you don’t always know what to say.”

SAY THIS, NOT THAT

Because of the stigma and fear associated with cancer, allow a learning curve for loved ones and acquaintances, according to Bill Goeren, a licensed clinical social worker and director of clinical programs at CancerCare, a nonprofit organization that provides telephone, online and face-to-face counseling, as well as support groups, education, publications and financial and copayment assistance to people affected by cancer.

When approaching the situation, Goeren says, a survivor should assess the relationship: What is its quality? How best can the other person be helpful?

Start by giving them more insight into how you actually feel, physically or emotionally. “I would gently inform them of what the reality of the situation is, if possible,” he says. “For some people, even their caregivers will often say these (hurtful) things because they are coming from their perspective.” They might not be considering that their words could be construed as unhelpful or unkind.

Carlson advises acknowledging what was said but also offering a gentle explanation of what it is like to have survived or be living with cancer. “Point out what you’re feeling and that you are positive, but you’re also scared. Be brave and say what you need to say,” she says.

Goeren’s advice to caregivers, loved ones and friends: Avoid generalizations, get educated about your loved one’s type of cancer and listen. “(You) don’t have to come up with an answer or resolve a problem,” he says. “I think we forget that listening can be the most important component of support. Listening is an active act of support.”

It’s also important to remember that patients and survivors don’t want to feel alone. “Tell someone ... ‘I hear what you’re saying, but I don’t know what it’s like to go through what you’re going through,” Goeren advises. When offering help, don’t create more of a burden. Instead of saying “Please let me know if you need anything,” say “What can I do to help your daily treatment go more smoothly?” Offer to make dinner, clean the house or drive children to activities.

“I’ve lived by myself for 50 years and am very independent, but when I have friends who want to bring me food, I let them,” Biehl says.

If survivors choose to walk away without responding, Goeren suggests seeking professional help or talking with other people who have had the same type of cancer. “It gives a sense of community and normalizes your responses to the world,” he says. The connection is essential and, in many cases, can be a lifeline. He adds: “It helps people live without fear of rejection or fear of being disregarded or disrespected.”

When in doubt, perhaps some things are better left unsaid. “It’s important for the people talking to remember (that) they have two ears and one mouth,” says Carlson. “You don’t have to say anything. You can tell them you love them, but, most important, just be there.”