Just Diagnosed With HER2-Mutant Non-Small Cell Lung Cancer? Here’s What To Expect

Hearing the words “you have lung cancer” can feel devastating, life-altering and scary. And when your care team explains that your condition is something called HER2-mutant non-small cell lung cancer (NSCLC), it probably adds a fair amount of confusion to the mix.

What does that even mean? And what happens now?

Thoracic oncologist Lukas Delasos, DO, is here to help. Dr. Delasos walks us through what you may expect when you’ve been diagnosed with HER2-mutant NSCLC.

What is HER2-mutant NSCLC?

Non-small cell lung cancer is one of the two main types of lung cancer. HER2-mutant NSCLC is a rare type within that group, accounting for about 1% to 3% of non-small cell lung cancers in the United States.

Unlike some other types of lung cancer, HER2-mutant NSCLC isn’t associated with smoking. It’s caused by a specific genetic mutation that tells cancer cells to keep growing and dividing.

“HER2 is a protein on the cancer cell. In people with HER2-mutant NSCLC, that protein is constantly activated,” Dr. Delasos explains. “It sends a signal to the nucleus of the cell, telling it to keep growing and dividing.”

Because NSCLC can develop without symptoms, it isn’t easy to detect in most people. And half of those who are diagnosed are found to have stage IV disease (metastatic cancer). That means the cancer has spread from their lungs to other parts of their bodies, like their bones, brains, liver or other organs.

What happens after diagnosis?

After you’re diagnosed with HER2-mutant NSCLC, you can expect to see your oncology team regularly to better understand your condition and map out a treatment plan.

“You might come in more at the beginning, but over time, we settle into a rhythm that works for you,” Dr. Delasos encourages.

If you haven’t already had it, your doctor may recommend molecular testing on your tumor. This helps identify whether you have a HER2 mutation.

“Even if someone’s already started treatment, we still test for HER2,” he says. “It helps us figure out the best path forward.”

Once your team has the information to determine the type and stage of your lung cancer, they’ll work with you to develop a treatment plan. That may include surgery, chemotherapy, immunotherapy and other medications.

Surgery

Whether you’re a candidate for surgery depends on how advanced your cancer is when it’s detected.

“If we catch it early — stage 1 or 2 and sometimes stage 3 — surgery to remove the tumor may be part of the plan,” Dr. Delasos shares.

First-line therapies: Chemotherapy and immunotherapy

Most people start treatment for HER2-mutant NSCLC with a combination of chemotherapy and immunotherapy. This approach helps your body’s own immune system attack cancer cells from multiple angles.

“Chemo sounds scary,” Dr. Delasos acknowledges. “But the regimens we use for this cancer are usually well tolerated. I call it ‘chemo-light.’ Most of my patients do really well and don’t lose their hair.”

He also emphasizes that treatment can be adjusted over time: “If side effects become a problem, we can remove a drug or lower its dose. I’d rather adjust treatment than have chemo make someone feel worse than the cancer itself does.”

Immunotherapy works by helping your own immune system recognize and attack cancer cells.

“Cancer cells can trick the immune system into thinking they belong,” he explains. “Immunotherapy removes that disguise so your immune system can do its job.”

The type of immunotherapy often used in NSCLC is called a checkpoint inhibitor. Dr. Delasos describes it like this: “Imagine your cancer cells hold up an ID badge to your immune system, Hey, I belong here. Don’t attack me. Checkpoint inhibitors block that ID badge. So, now your immune system can recognize the cancer and kill it.”

Second-line therapies

If your cancer doesn’t respond well to first-line treatments, newer options are available. If your cancer grows or spreads after initial treatment, your oncologist may recommend one of two newer drugs:

• Fam-trastuzumab deruxtecan (Enhertu®): An IV infusion that delivers chemo directly into HER2-positive cancer cells.
• Zongertinib (Hernexeos®): A once-daily pill that’s shown strong tumor response rates and fewer side effects.

“Both are strong second-line options,” Dr. Delasos states. “And if one doesn’t work, we can try the other.”

Looking at the long-term

Right now, there’s no cure for stage IV HER2-mutant NSCLC — but your cancer team’s focus will be on helping you live as well as you can.

“Our job isn’t just to keep people alive longer,” Dr. Delasos clarifies. “It’s to help them live well. That means managing symptoms, giving treatment breaks when needed and helping people do the things they love.”

He encourages his patients to keep doing the things that bring them joy, whether that’s biking, traveling or simply spending time with family.

“I tell them, let me worry about your cancer. You focus on living your life,” Dr. Delasos advises. “It can be easier said than done, I know. But the more you can rely on your team, the better you’re able to enjoy your life.”