Non-small cell lung cancer: Talk about your diagnosis

Realizing that you have non-small cell lung cancer (NSCLC) is often overwhelming. And this is how you tell others about your diagnosis.

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

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

How do you let people know? There is no one right way. But the following steps can help make 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 can be helpful to first write down everyone you want to notify and when you want to let them know. “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 want to tell. In many cases, your partner is your support system and your caregiver when you are undergoing treatment.
• children and grandchildren. They sense when something is wrong, so it’s important to tell them the truth. “I was 13 when my father died of lung cancer,” says Jill Feldman, who was diagnosed with NSCLC in 2009. “I knew from my own experience that I had to be open and honest with my children as well.”
• 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 changes in schedule. Remember that federal law prohibits them from discriminating against lung cancer patients. You need to speak to someone in your human resources department.

2. Think about how you want to spread the news

If you are personally sharing your diagnosis, find a quiet, private place where you can speak 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 speak to everyone in person. You can also tell people:

• In a group. Just make sure everyone is there before you start. “In the middle of my close-knit Bible study group, someone walked in and stalled the conversation,” says Conneran.
• Through a loved one. Ask someone you trust to tell others. Let them know what and how much you want to share.
• Via email, SMS or website. You can keep people up to date via email or SMS. Or set up a website like CaringBridge. “I emailed the parents of my kids’ friends to keep misinformation from coming back to them,” says Feldman. Specify how you want people to respond; You may not want to receive calls. Or say that you are unable to answer each one individually.

3. Share your diagnosis

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

• Make sure you have a good understanding of your diagnosis. People will ask questions about your cancer. You should be able to tell people if your cancer has a cure and what the goals of your treatment are, Sands says.
• Decide how much you want to share. You don’t have to tell everyone everything. Think about what information you choose to disclose and how you respond when 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 uncomfortable right now.”
• Adjust your approach. You know your loved ones best, so you can anticipate how the conversation will go. For Conneran, she knew that the conversation would be different with each of her grown children. “My son is an engineer with a technical mind. He wanted to know every detail about my illness and my treatment plan,” she says. “But my daughter is more emotional. She wanted reassurance that I would be fine.”
• Formulate what support you need. Most people want to help but don’t know where to start. Tell them what you need, e.g. B. someone walking your dog or a friend you can call anytime. You can also assign a loved one to handle requests for help.
• Have information and resources ready. It’s possible that you won’t be able to answer every question. Have pen and paper ready so you can keep a list of questions to ask your healthcare team. You can also refer them to a support group or website for more information, e.g. For example, the Go2 Foundation for Lung Cancer, the American Lung Association, and the Lung Cancer Foundation of America.
• Gather feedback. Stop by to make sure 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 differently to cancer news, and their reactions may surprise you. Some people will want to help right away, while others will need time.

In the case of lung cancer, the disease is also stigmatized. “People will say, ‘Have you smoked?’ or ‘I didn’t know you smoked,'” says Feldman. “It feels like shame and guilt, and it’s stressful.” Prepare a response such as, “It doesn’t matter how I got cancer; I need your support now.”