At the 2026 American Society of Clinical Oncology (ASCO) Annual Meeting, a panel discussed the experiences of people living with ALK-positive non-small cell lung cancer (NSCLC), a rare type that makes up about four percent of all lung cancer cases. Many families are surprised by this diagnosis.
BlackDoctor spoke with Dr. Kristin Higgins, the panel chair and a Radiation Oncologist at City of Hope Cancer Center Atlanta. She talked about how new advances are helping people live longer with this diagnosis, the importance of regular biomarker testing, and the need for a team approach to treatment.
ALK-positive lung cancer does not match the typical image of lung cancer. Most lung cancers are linked to smoking, but ALK mutations usually affect people who have never smoked.
The ASCO panel shared a case study of a 53-year-old woman diagnosed with EML4-ALK fusion-positive NSCLC to help explain this reality.
“[ALK]-translocated or [ALK]-mutated lung cancer [is] a rare type of lung cancer that occurs in about four percent of patients with lung cancer, and it generally occurs in patients who are non-smokers. So… [otherwise] healthy women and men … Many times it happens to be a lung cancer that is driven by a mutation and not by smoking,” Dr. Higgins shared.
Because this diagnosis is often unexpected, the first step is to get specialized testing as soon as possible to find the best treatment.
Instead of just sharing statistics, the ASCO panel followed this 53-year-old patient’s story over several years to show how treatment plans need to change as the cancer adapts.
After her diagnosis and successful surgery to remove a 3 cm tumor from the upper part of her lung, the patient began taking a targeted therapy pill called alectinib.
These pills work by blocking tiny cancer cells in the body while leaving healthy cells alone. The patient responded very well to the therapy and had very few side effects each day.
Even when a drug is working well, cancer cells can sometimes grow in one area. During her regular scans, doctors found a single new spot in her lung.
Importantly, there was no sign of cancer anywhere else in her body, her brain MRI was clear, and she felt active and healthy (doctors call this an ECOG 0 performance status).
The panel called this situation oligoprogression, which means there is just one growing spot while the targeted therapy is still working elsewhere. Having one new spot does not mean the drug has stopped working.
“…Many times we’re able to give surgery for that situation or even radiation, [and] the patient can stay on the drug that’s otherwise working for other parts of their body. And that’s a really good strategy to use … so that you can keep patients on this drug that works well,” Dr. Higgins notes.
Doctors can use surgery or radiation to treat that one spot, which lets the patient stay on their current medication for longer.
A common issue with ALK-positive cancer is that it often spreads to the brain. Studies show that about 25% to 40% of patients have brain metastases when they are first diagnosed. Later, during a routine three-month brain MRI, doctors found 13 small spots in the patient’s brain.
Because these spots were found early through regular scans, the patient still felt well (ECOG PS 1) and had no neurological symptoms.
When this occurs, doctors quickly adjust the treatment plan by adding precise radiation and medicines that can reach the brain.
“…This type of lung cancer is very common to go to the brain … And typically, we would try to deploy stereotactic radio surgery [a highly precise type of radiation] for patients with brain [metastasis] and then switch to a targeted therapy that gets into the brain more,” Dr. Higgins adds.
The panel explained that the next drug, lorlatinib, is designed to reach the brain and treat multiple spots more effectively than first-line treatments.
The next turning point happens when the cancer starts to spread more widely. Six months after her brain radiation, a routine PET-CT scan showed new spotsin her bones, liver, and lungs.
Even with these new findings, she was still ‘oligosymptomatic,’ which means she felt well, looked healthy, and had almost no symptoms, even though the scans showed more cancer.
This shows an important point for patients: you can feel healthy even if scans show the cancer is starting to resist treatment. That’s why regular scans are so important.
When the cancer spreads widely, local radiation is no longer enough. Doctors need to stop and do another biopsy, either by taking a new tissue sample or using a blood test, to see how the cancer has changed. The tumor usually escapes treatment in one of two ways:
Because of new targeted therapies, people with this cancer are living much longer. Now, doctors are learning more about long-term survivorship, which was rare before since lung cancer used to progress quickly.
With ALK-positive patients now living for years, Dr. Higgins said doctors need to focus more on everyday quality-of-life issues that are important to younger, active people.
“To be honest, [this] is such an understudied area because for so long, our patients with lung cancer did not live very long. Now, because we have better treatments, we have survivors, but we don’t have much data. So we have to listen to our patients to guide us in what they need. A lot of patients that are diagnosed with [ALK]-mutated lung cancer [are] young, and so things like sexual health side effects related to intimacy with your partner … those are important things for patients that are diagnosed … in their [thirties].”
Targeted pills are usually gentler than traditional chemotherapy, but they can still cause side effects, such as changes in lab results. Dr. Higgins encourages patients to talk openly with their care team. Often, doctors can adjust the dose to reduce side effects without making the treatment less effective.
Dr. Higgins shared three key points from the ASCO session to help patients feel more empowered:
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