I too have been diagnosed with multifocal lung cancer (or perhaps it’s bilateral metastatic lung cancer). Long post so I’ve tried to organize it. To date, I have done no treatments except for the lobectomies. I would be interested to hear if others who were diagnosed with multifocal lung cancer have done chemotherapy, targeted treatments, or immunotherapy; and, if so, their outcomes.

HISTORY: In December 2019, I had a RUL lobectomy to remove a 5.4 cm. tumor discovered accidentally in October 2019. I did no chemotherapy following the lobectomy. The first post-lobectomy scan in June 2020 revealed four bilateral nodules, which resulted in a diagnosis of multi-focal lung cancer, more scans (every 3 months), and a second lobectomy (LUL) in March 2021.

SCANS: Scans after the second lobectomy showed growth in both size and number of nodules, to the point of “innumerable” nodules in the October 2021 and January 2022 scans. The latest scan in September 2022 showed slightly increased numerous bilateral pulmonary nodules, some with a central solid component and surrounding groundglass. My oncologist estimates there are between 20 and 30 nodules. The largest are around 1 cm.

MOLECULAR TESTING: Molecular testing of the six growths removed during the two lobectomies shows EGFR exon 21 p.L858R mutation in the 2019 tumor and in the three nodules from the second lobectomy; KRAS Exon 2 p.G12C in one mass from the second lobectomy; and KRAS G13C exon 2 in the other mass from the second lobectomy. In September, samples of the existing nodules were taken via a navigational bronchoscopy; the two nodules tested also showed EGFR exon 21 p.L858R mutation. They are identical in mutations (nine) to one of the nodules removed in the second lobectomy.

TREATMENT PLAN: My surgeon believes we should watch and wait. My oncologist recommends starting osimertinib (Tagrisso). There are pros and cons to each option but, after many sleepless nights, I have decided that I do not want to start Tagrisso until the nodules grow bigger or I become symptomatic. My reasons for deciding to delay treatment include:
• So far I feel great: I am asymptomatic. I have essentially no burden of disease or burden of treatment (although humidity curtails exercise).
• My nodules are not yet aggressive. They exhibit slow growth and no metastasis to brain, bones, or liver (or anywhere else). I feel that starting treatment might be like poking a stick into a hornets’ nest.
• The inevitability of my cancer eventually becoming resistant to the treatment, leading to a trainload of subsequent treatments. I prefer to catch a later train.

I MUST EMPHASIZE: my decision to delay treatment (not considered reasonable by all) is not a criticism of current treatment options. There are good reasons to start treatment: potential for brain metastases; treating the nodules before they become aggressive and more complex, at which point treatment might not be as effective. I'm just not ready.

My next scans are scheduled in January. I have decided not to worry about the results of the scans, just about the possibility of snow and ice that would prevent me getting to the appointment (a 60 mile drive).