Non-small cell lung cancer: talking about your diagnosis

Finding out you have non-small cell lung cancer (NSCLC) is often overwhelming. The same goes for telling others about your diagnosis.

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

But talking about it is important. Your friends and family can give you the support you need, like a shoulder to lean on, a ride to the doctor’s office, or an extra pair of hands around the house.

So how do you let people know? There is no right way. But the following steps can make the conversation easier for you and your loved ones.

1. Decide who you want to talk to

You don’t have to tell everyone right away. It can be helpful to first write down all the people you want to tell 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 are often the first person you want to talk to. In many cases, your partner is your support system and caregiver when undergoing treatments.
• Children and grandchildren. They can sense when something is wrong, so it’s important to tell them the truth. “I was 13 when my dad died of lung cancer,” says Jill Feldman, who was diagnosed with NSCLC in 2009. “From my experience, I knew I also had to be open and honest. with my children.”
• Friends and family. They can also offer support and a sense of community.
• Employers and colleagues. 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 will need to speak to someone in your Human Resources department.

2. Think about how you want to break the news

When you share your diagnosis in person, you’ll want to find a quiet, private place to talk openly. You may want to have a loved one, like 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 is there before you start. “Halfway through the story of my close-knit Bible study group, someone walked in and derailed the conversation,” Conneran explains.
• Through a loved one. Ask someone you trust to tell others about it. Let them know what and how much you want to share.
• By e-mail, SMS or via a website. You can keep people informed by email or SMS. Or create a website, such as CaringBridge. “I emailed the parents of my kids’ friends so that no misinformation would come back to them,” Feldman says. Indicate how you would like people to react; you may prefer not to receive calls. Or say you are unable to respond to each individually.

3. Share your diagnosis

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

• Make sure you fully understand your diagnosis. People will ask about your cancer. You should be able to tell people if your cancer is curable and what your treatment goals are, Sands says.
• Decide how much you want to share. You don’t have to tell everyone everything. Think about what information you want to share and how you’ll react if someone brings up a sensitive topic, says Win Boerckel, lung cancer program coordinator at CancerCare. You can say, “I know you’ll understand that I’m not comfortable with this right now.
• Adapt your approach. You know your loved ones best, so you can anticipate how the conversation may unfold. For Conneran, she knew the conversation would play out differently with each of her adult children. “My son is an engineer with a technical mind. He wanted to know all the details of my illness and my treatment plan,” she says. “But my daughter is more emotional. She wanted to be reassured that I would be fine.
• Explain the support you need. Most people want to help out, but they don’t know where to start. Tell them what you need, like someone to walk your dog or a friend you can call at any time. You can also designate a relative to handle requests for assistance.
• Prepare information and resources. Chances are you won’t be able to answer all the questions. Have a pen and paper handy so you can keep a list of questions you want to ask your healthcare team. You can also refer them to a support group or website for more information, such as the Go2 Foundation for Lung Cancer, the American Lung Association, and the Lung Cancer Foundation of America.
• Look for comments. Check that they understand what you are saying and ask them if they have any questions. “You want to make sure you’re on the same page,” says Boerckel.

4. Be prepared for any reaction

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

Along with lung cancer, there is also the stigma attached to the disease. “People will say, ‘Did you smoke?’ or ‘I didn’t know you smoked,'” Feldman says. “It’s like shame and blame, and it’s stressful.” Prepare a response, for example: “It doesn’t matter how I got cancer; I need your support right now.