Stage IV ROS1 Lung Cancer: Phil's Patient Story
This lung cancer diagnosis at a glance
- Stage at diagnosis
- Stage IV
- Biomarkers
- ROS1 mutation
- Sex
- Male
- Spread to
- Lymph nodes; other lung
- Treatment
- chemotherapy, targeted therapy, radiation and a clinical trial
- Outcome
- Living With Cancer
Treatment course, step by step
- First doctor proposed chemotherapy, radiation, and lung removal
- Second opinion found Stage IV disease in lymph nodes near the heart and in the other lung, so surgery and radiation were not appropriate then
- Started chemotherapy while waiting for genetic testing
- After 2 rounds, ROS1 mutation was found and he switched to a twice-daily targeted pill; drug name was not stated
- First targeted therapy worked for about 2 years, then progression was treated with radiation
- Entered a Mass General clinical trial with a second targeted/experimental drug chosen for fewer side effects
- Trial visits became less frequent over time, with ongoing treatment as long as the cancer does not progress.
What happened, in summary
Phil was an active 60-year-old looking toward retirement when a cough would not go away. At first, doctors treated it like a sinus infection or pneumonia. A CT scan was read as not cancer, and the start of COVID delayed further evaluation. After an 8-month wait, a lung biopsy found cancer cells. One doctor told him he would need chemotherapy, radiation, and lung removal, then advised him to get his affairs in order. Phil sought a second opinion at UT Southwestern. There, he learned the disease was Stage IV: it had reached lymph nodes near his heart and was also in his other lung, so surgery and radiation could not remove it. His oncologist started chemotherapy to slow the cancer while genetic testing was done. After 2 rounds, testing found a ROS1 mutation. Phil switched to an oral targeted therapy taken twice a day. The drug was not curative, but it stopped the cancer for about 2 years. When the cancer progressed, he had radiation. His next option was a clinical trial at Mass General, chosen because its side-effect profile better fit his active life. Trial visits eventually stretched to every 3 months. As of February 2026, Phil was 5 years into life with Stage IV ROS1-positive lung cancer, still on the clinical-trial drug and planning future trips with his wife.
Where this story comes from
This is a lay summary of an account first published by The Patient Story. Read the original in full
How we source and attribute stories Accuracy and limitations
These are lay summaries of published cancer stories, for information only. No two cancers behave the same way, and nothing here predicts your own diagnosis or replaces advice from your oncology team. Read the full disclaimer