Stage IV ALK Non-Small Cell Lung Cancer: Linnea's Patient Story

Linnea, who was diagnosed with Stage IV Non-Small Cell Lung Cancer

This lung cancer diagnosis at a glance

Stage at diagnosis
Stage IV
Subtype
Non-Small Cell Lung Cancer
Biomarkers
ALK mutation / ALK-rearranged lung cancer
Sex
Female
Spread to
Lungs / intrapulmonary disease
Treatment
surgery, chemotherapy, genetic testing, targeted therapy and a clinical trial
Outcome
Living With Cancer

Treatment course, step by step

  1. Initial Stage I lung cancer was treated with surgery removing most of the left lung
  2. Chemotherapy followed
  3. First scan after chemotherapy showed the cancer had returned in the lungs
  4. In 2008, after other options had run out, biopsy and genetic testing found an ALK mutation
  5. Entered an ALK-targeted clinical trial at Mass General as the fourth NSCLC patient in the world to try that experimental therapy
  6. The first trial worked
  7. Later continued through additional phase trials and was on a third phase trial 12 years into care.

What happened, in summary

Linnea Olson was 45 when she was first diagnosed with lung cancer. Her initial diagnosis was Stage I, and she had surgery that removed most of her left lung, followed by chemotherapy. The first scan after chemotherapy showed something back in her lungs, forcing her to shift from expecting cure to living with advanced disease. By 2008, she had run out of treatment options. Her oncologist told her she might have 3 to 5 months left. A biopsy was then sent for genetic testing, which found an ALK mutation. That result changed everything. At Mass General, Linnea joined a clinical trial targeting ALK and became the fourth person in the world with non-small cell lung cancer to try that experimental therapy. It worked. Over the next 12 years, Mass General became like a second home, and her medical team became like family. She continued through additional phase clinical trials and was on her third phase clinical trial when sharing her story. Linnea was clear that these treatments were not a cure; they controlled the cancer for a time and required living with uncertainty. She continues to live with Stage IV ALK-positive lung cancer through long-term clinical-trial treatment.

Where this story comes from

This is a lay summary of an account first published by Massachusetts General Hospital. Read the original in full

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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.

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