When patients with lung cancer ask social worker Barbara Mitchell for guidance in talking to people about their difficult diagnosis, she lays out her bedrock principles:
- Your life is NOT an open book just because you have lung cancer.
- You do NOT need to answer every question or respond to every phone call or text seeking an update about your health.
- It’s OK to say, “I hear your concern for me, and I appreciate it, but I just don’t have it in me to talk about this right now. I’ll let you know when I do.”
These insights come from Mitchell’s practice as a senior clinical social worker at Memorial Sloan Kettering Cancer Center (MSK) — and from deep personal experience as a cancer patient herself.
In this article, she shares tips for discussing lung cancer with loved ones, friends, employers, and others.
Take Control When So Much Feels Out of Your Control After a Lung Cancer Diagnosis
“Many people feel a profound loss of control after learning they have lung cancer,” says Mitchell. “There are so many new things coming at them quickly. I remind them that one thing they can control is the narrative about their own life and how much information they give and to whom.”
She advises telling people about the diagnosis at a pace that feels right to you. “Be mindful of the amount of time and energy you give to updating people and answering their questions,” she says. “Responding to one phone call or a few texts might feel right, but it can also feel exhausting depending on where a person is in their treatment.”
Instead, she says, feel free to:
- Slow down. “Press pause” so you can concentrate on your care plan and well-being and not feel overwhelmed with new responsibilities such as continual updates to friends and family.
- Delegate. Some patients designate one family member or friend to provide updates, so they don’t have to repeatedly explain their status, which many people find frustrating and tiring. You can also use apps to update a select group.
- Remember: There is no perfect way to share difficult news like a cancer diagnosis.
Learn about lung cancer doctors, surgeons, and other experts at MSK
How To Talk to Family, Friends, Co-Workers, and Others About Lung Cancer
Imagine a concentric circle — like a target with a bullseye, says Mitchell. “You have an inner circle of your closest family and friends, who you might share the most with,” she advises. “Then there are people, including co-workers and acquaintances, who you may give fewer details to — or decide if you want to say anything at all.”
Talking to Your Inner Circle of Family and Friends About Lung Cancer
“It’s very hard to hear you have lung cancer,” says Mitchell. “It’s maybe just as hard to tell someone you love that you have lung cancer.”
Your partner and close family members may know when an important scan or appointment is coming up. With them, Mitchell suggests being direct. You may find it helpful to say, “We did not get the news we were hoping for, this is what the doctor shared with me.”
- If possible, bring someone with you to important appointments. “A second set of ears can be a big help,” says Mitchell, “because there is so much information.”
- For those close to you, talking about the steps in your lung cancer treatment plan can be a useful way to discuss how they might help, as your needs change with different therapies.
Discussing Lung Cancer With Friends and Acquaintances
How much you want to share is entirely up to you, says Mitchell. For instance, you may be receiving immunotherapy that doesn’t result in visible signs of illness, such as hair loss. “You may not want to share your health status with many people, and that’s your right,” she says.
- Feel free to set boundaries. “It’s perfectly fine, when someone asks about your health, to say, ‘Thank you for your interest, but I’m not up to discussing it right now. I’ll let you know when I am.’ When I tell this to patients, a light bulb comes on,” Mitchell says. “Some of them feel they need permission to prioritize their needs.”
Another challenge can come from a well-intentioned offer: “Let me know if there’s anything I can do to help.” For some people, Mitchell says, this can feel like one more task a patient needs to take on. “You may find it stressful: ‘Oh, great — on top of everything else, I have to figure out how to make my friend feel useful.’”
- If an offer of help feels like a burden, politely decline — but keep the door open for the future. You can say, “Thank you, I’m all set for now. But I would love to reach out later if I need help.”
- If an offer of help would be useful, discuss specifics tasks, such as carpooling kids to school, driving or accompanying the patient to doctors’ appointments, picking up prescriptions, and leading group projects like meal trains and food prep.
- You might find it helpful to have someone come just to sit and talk — often about anything except cancer. “Talking about cancer all the time gets overwhelming,” says Mitchell. “A friend who will come and talk about something else can be a huge help.”
Talking With Co-Workers and Employers About Lung Cancer
There are legal protections that you may want to learn more about, including the Family and Medical Leave Act, as well as short- and long-term disability programs that may be specific to your employer.
“I encourage people who believe they will have side effects that will prevent them from coming to work for more than a few days to have an honest discussion with their employer — including the Human Resources department — about what accommodations can be made,” says Mitchell. “That may include working from home.”
- If you disclose your diagnosis to your employer, discuss whether it’s appropriate to tell any other employees. In some cases, it may not be necessary.
- Keep records of your conversations with employers to help you remember what was agreed to. These records may also be important if your legal rights are compromised.
Talking With Children About Lung Cancer
“Telling your kids you have cancer may be the most difficult conversation of all,” says Mitchell, “because we want so much to protect our children.” She says the key is honest communication that is age-appropriate but also direct. “Even with younger children, use the word cancer — not ‘sick’ or ‘ill.’ Kids get colds and they need to know this is not a cold.”
Children know when something is wrong, says Mitchell, and adds, “Kids are self-absorbed — as they should be — and they may fear they somehow caused the cancer unless there is clear, honest communication.”
- Mitchell often does role-playing exercises with parents facing cancer, so they can get comfortable with what they will say to their children. She also tells parents to encourage questions from their children and to answer them honestly or promise to get back with an answer after speaking with their doctor.
- Tell children how their lives will be impacted, such as changes in carpools or periods when their parent will be gone from home for treatment. “It’s important for children to know what will change in their lives and how they are being cared for.”
How To Respond When Someone Asks, “Was Your Lung Cancer Caused by Smoking?”
“There is a very human desire to identify cause and effect,” Mitchell says. “And even though some people may not intend to be cruel with this question, it can be very challenging for patients.”
Anyone with lungs can get lung cancer. “Smoking is certainly a risk factor,” she says. “But some people live very healthy lifestyles and never smoke and develop lung cancer. In other cases, some smokers are so guilt-ridden they feel they deserve cancer, which is terribly sad.”
Here are a few possible responses:
- “A social worker at MSK told me not all smokers are diagnosed with lung cancer, and not all lung cancer patients were smokers.” And leave it at that.
- “No one knows exactly why I got lung cancer, and I’m choosing not to focus on that.”
- “It doesn’t really matter how or why I got lung cancer. What I know is that I’ll need support as I go through treatment.”
- Joining support groups can be a safe space to talk about the feelings of stigma that can surround lung cancer. “In support groups we run at MSK for people with lung cancer,” says Mitchell, “I see patients really relax when they are able to talk to other people who know what they’re going through.”
How To Talk About Lung Cancer When You Are Visibly Ill
People who require supplemental oxygen devices during lung cancer treatment can feel especially conspicuous, particularly with children or grandchildren. “I encourage them to say, ‘This is what the doctor says I need right now to do the things I do. My doctors and I are hopeful that I won’t need it for long, but I do need it right now.’”
Connect the need for oxygen to something meaningful in the child’s life, says Mitchell. For example, “This is what I need to go to dinner or the movies or to take a walk with you right now, but hopefully not forever.”
Key Takeaways
Control your own story. Your life is not an open book just because you have lung cancer. It’s OK to set boundaries, take breaks from updates, ask someone else to handle sharing news, and tell people you aren’t up to talking about cancer at the moment.
Be direct when talking with loved ones. Sharing details with close family and friends can help them understand and support your care plan. With acquaintances or co-workers, it’s perfectly fine to share less — or nothing at all — depending on your comfort level.
Talk to children clearly and honestly. Use the word “cancer” even with younger children so they understand this is not an illness like a cold. Explain what will change in their routines and reassure them that lung cancer isn’t their fault.
Focus on your treatment plan. Tell people who ask if the cancer was caused by smoking that you are focused not on the cause of the cancer, but on the treatment — and that you would appreciate their help and support.