Living Well With HER2-Mutant Non-Small Cell Lung Cancer

A diagnosis of HER2-mutant non-small cell lung cancer (NSCLC) can feel like the ground has shifted beneath you. It’s normal to worry about what it means for your future. But living with lung cancer means just that — living. Not just getting by.

“It’s a life-changing diagnosis,” acknowledges thoracic oncologist Lukas Delasos, DO. “But I always tell my patients that having NSCLC doesn’t mean your life stops. I want them to keep doing the things that make life worth living.”

Dr. Delasos shares advice to help you stay active, be supported and stay hopeful while managing HER2-mutant NSCLC.

1. Do what you love

What brings you joy? Maybe it’s biking, cooking or spending time with family. Whatever makes your life full, keep it up as much as you can.

“I don’t want this diagnosis to take away the things you love,” Dr. Delasos encourages. “You may need to adjust your pace, but you should keep going.”

During treatment, many people feel well enough to travel, exercise and enjoy social events. Be kind to yourself and listen to your body — but don’t be afraid to say yes to the things that make you feel like you. Even if that means tweaking your treatment.

“For example, if you want to take a trip, we can usually shift treatment schedules to make it work,” he continues. “Delaying by a week or two won’t hurt your outcome, and the benefit for your mental health can be immeasurable.”

And if NSCLC treatment side effects are getting in the way of you and the life you want to live, tell your team. They may be able to adjust the dosages or switch medications to help you feel your best.

2. Build support systems

Supporting you through your cancer journey goes beyond the medication and treatments you receive. Healthcare professionals and others can help you with everything from emotional health to practical challenges.

“We offer support services from the start and encourage everyone to take advantage of them,” Dr. Delasos shares. “Even if you’re feeling OK now, it helps to be connected in case things change later.”

To build community and get support:

• Meet with a social worker. They can help you navigate the emotional and logistical sides of cancer care — everything from coping with stress and finding financial resources to seeking accommodations at work, arranging transportation and more.
• Connect with palliative care. Providers can help manage symptoms like pain, fatigue or shortness of breath. They can also support your emotional and spiritual well-being throughout your treatment.
• Join a support group. Connecting with others who are going through a similar experience can help you feel less isolated. They can offer emotional support and share practical tips for day-to-day challenges. You may find an online community or a local group to meet with in person.

3. Don’t get stuck on statistics

It’s tempting to dwell on survival rates and prognosis information — but keep in mind that those numbers don’t tell your story.

“The statistics are medians,” Dr. Delasos reminds us. “They don’t show the full picture. Some people live well for many years with HER2-mutant NSCLC. We don’t know where any one person will fall.”

If you want to learn more about your prognosis, ask your care team. But don’t let the numbers guide your life.

4. Stay flexible

HER2-mutant NSCLC is a serious condition, and treatment is often ongoing. But your needs — and your goals — may change over time.

“You’ll probably see your oncologist more often early on,” Dr. Delasos says. “But as you go, you should be able to tolerate treatments better and know more about what to expect. We also may space out your appointments more and more.”

Living with lung cancer is a journey, and no two paths look the same. But with the right support, you can keep moving forward — and living well — every step of the way.