Non-Small-Cell Lung Cancer: Talking About Your Diagnosis

Finding out that you have non-small-cell lung cancer (NSCLC) is often overwhelming. And so is telling others about your diagnosis.

You may worry how others will react. You may not want your friends and family to worry or to treat you differently, says Jacob Sands, MD, lung cancer specialist at Dana-Farber Cancer Institute and spokesperson for the American Lung Association.

But talking about it is important. Your friends and family can offer the support you need, such as a shoulder to lean on, a ride to the doctor’s office, or extra pair of hands at home.

So how do you let people know? There’s no one right way. But the following steps may help the conversation go easier for you and your loved ones.

1. Decide Who You Want to Tell

You don’t have to tell everyone right away. It may help to first write down everyone you want to notify and when you want to tell them. “For me, it was like the layers of an onion,” says Terri Conneran, who was diagnosed with NSCLC in 2017. “I wanted to tell my family first, then my closest friends, and so on.” Your list may include:

• Spouse or partner. They’re often the first person you’ll want to tell. In many cases, your partner is your support system and caregiver when you undergo treatments.
• Kids and grandkids. They can sense when something’s wrong, so it’s important to tell them the truth. “I was 13 when my dad passed of lung cancer,” says Jill Feldman, who was diagnosed with NSCLC in 2009. “From my experience, I knew that I had to be open and honest with my kids, too.”
• Friends and family. They can also offer support and a sense of community.
• Employers and co-workers. At some point, you may need time off or schedule changes. Keep in mind that federal law prohibits them from discriminating against lung cancer patients. You’ll need to talk with someone in your human resources department.

2. Consider How You Want to Break the News

When sharing your diagnosis in person, you’ll want to find a quiet, private place to speak openly. You may want to have a loved one, such as your spouse, with you for support.

In many cases, you may not have the time, energy, or desire to talk to everyone one-on-one. You can also tell people:

• In a group. Just make sure everyone’s there before you begin. “Midway through telling my close-knit Bible study group, someone walked in and derailed the conversation,” says Conneran.
• Through a loved one. Ask that a trusted person tell others. Let them know what and how much you want to share.
• By email, text, or a website. You can keep people updated through email or text. Or set up a website, such as CaringBridge. “I sent an email to the parents of my kids’ friends so there wouldn’t be any misinformation that would get back to them,” says Feldman. Include how you’d like people to respond; you may prefer not to get calls. Or say that you aren’t able to respond to everyone individually.

3. Share Your Diagnosis

It’s often hard telling others about your diagnosis, but the following steps can help. You may also want to consult your doctor, therapist, social worker, or child’s pediatrician for advice.

• Make sure you understand your diagnosis well. People will ask questions about your cancer. You should be able to tell people if your cancer is curable and what the goals are for your treatment, says Sands.
• Decide how much you want to share. You don’t have to tell everyone everything. Think about what information you want to disclose and how you’ll respond if someone brings up a touchy topic, says Win Boerckel, lung cancer program coordinator for CancerCare. You can say, “I know you’ll understand that I’m uncomfortable with that right now.”
• Tailor your approach. You know your loved ones best, so you can anticipate how the talk may go. For Conneran, she knew that the conversation would go differently with each of her adult kids. “My son is an engineer with a technical mind. He wanted to know every detail about my disease and treatment plan,” she says. “But my daughter is more emotional. She wanted reassurance that I would be OK.”
• Spell out what support you need. Most people want to lend a hand, but they don’t know where to start. Tell them what you need, such as someone to walk your dog or a friend you can call at any hour. You can also appoint a loved one to handle requests to help.
• Have information and resources ready. Chances are you won’t be able to answer every question. Have a pen and paper ready so you can keep a list of questions that you want to ask your health care team. You can also refer them to a support group or website for more information, such as the Go2 Foundation for Lung Cancer, American Lung Association, and Lung Cancer Foundation of America.
• Seek feedback. Check in to make sure that they understand what you’re saying and ask if they have any questions. “You want to make sure you’re on the same page,” says Boerckel.

4. Be Ready for Any Reaction

People react to cancer news in different ways, and their responses may catch you off guard. Some people will want to help right away, while others may need time.

With lung cancer, there’s also stigma attached to the disease. “People will say, ‘did you smoke?’ or ‘I didn’t know you smoked,’” says Feldman. “It feels like shame and blame, and it’s stressful.” Have a response ready, such as, “It doesn’t matter how I got cancer; I need your support right now.”