A lung cancer diagnosis can be overwhelming. Many people living with lung cancer may be hesitant to share what they are going through, speak up about their needs or advocate for themselves. This can potentially lead them to delay treatment, not remain on treatment or not seek treatment at all.
But there are clear, simple ways for people living with lung cancer to feel more empowered as they move through the diagnosis and treatment process. As part of the Sound Up for Lung Cancer campaign, we’ve gathered thoughts, tips and guidance from people who have been there, from those living with lung cancer and caregivers to patient advocates and health care providers.
1. Prepare questions ahead of time
Having pre-written questions about the topics you want to discuss can help you have more open conversations at your appointments. These could include questions about:
- Available treatments
- Recent advancements in care or clinical trials
- Changes in symptoms
- Support resources that may be available
2. Take notes
During your appointments, it can be difficult to receive a lot of information at once, so writing things down to read later can help inform what you want to talk about next time. It also can be helpful to bring a family member or friend with you to any health care appointments to be a second set of ears in the doctor’s office.
3. Don’t be afraid to open up to your health care provider
Discussing what you want — and what you’re experiencing — can help you and your health care team make collaborative decisions and determine the best treatment options for you. Never forget that you’re an expert on your lived experience, and it’s important to continue to advocate and trust yourself while working with your care team.
An oncologist said, “I encourage people affected by lung cancer to ask whatever questions they have without feeling any hesitation, any embarrassment or thinking whether any question is worth asking or not. I encourage them to ask everything that’s on their mind.”
4. Ask about biomarker testing
Not all lung cancers are the same, and today, scientists are able to determine the genetic makeup of each person’s tumor. This type of testing — called biomarker testing — can help doctors determine what treatment may be appropriate for your specific type of lung cancer.
If you are living with lung cancer and haven’t received a biomarker test, aren’t sure if you received one or don’t understand the results of your test, just ask your doctor. Understanding your biomarker test results can help you and your doctor select an appropriate lung cancer treatment for you.
5. Track your wellness
A lung cancer diagnosis comes with a lot of changes — to your routine, your body and your emotional well-being. It’s important to keep track of those changes and discuss them with your health care team, so they can help you navigate.
Using a journal or app to keep track of what you ate, your sleeping habits and your movement can better help you and your care team see a bigger picture of how you’re doing.
6. Don’t forget what makes you, you!
As you’re able, engage in your favorite hobbies, activities and visits with loved ones. You also can use in-person and online support groups to connect with others affected by lung cancer. These are often available through trusted patient organizations or your treatment center.
Lavern, who’s living with lung cancer, said, “It is important that you lean into the experiences that bring you joy. Before your diagnosis, you were a whole person living inside of your life, and then your diagnosis happened. Reconnect with that self that you were before your diagnosis. You’re still that person.”
Living with lung cancer comes with many challenges, but feeling empowered to speak freely to your health care team shouldn’t be one of them. For more information on Sound Up for Lung Cancer, stories and resources, visit: www.novartis.com/diseases/lung-cancer/sound-up.