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Celebrating 25 years of lung cancer

Lung Cancer | Last Active: Sep 10, 2023 | Replies (125)

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@lijda

Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the worst although caregiving, for both the carer and the cared, isn't, of course, the best.

Second, here is an update, as requested. I am doing fine! I am very comfortable with my decision not to start targeted treatment (Tagrisso for EGFR mutation) until I become symptomatic or something of concern shows on the 3-month scans. The January CAP (chest/abdomen/pelvis) scan showed the usual slow growth of some lung nodules (out of the 20 to 30 lung nodules I have); the brain MRI was fine.

My key questions for others with multifocal lung cancer are:

(1) do you have any metastases beyond the lungs? (I really don't like lumping bilateral lung lesions with metastases to other locations such as lymph nodes or brain or bone etc etc. By definition, bilateral lung lesions are considered metastatic and, therefore, stage 4, but I just don't think bilateral lung lesions are in the same league.)

(2) Based on molecular testing, are you doing targeted therapy to treat the specific malignancy identified by the molecular testing?

I am eagerly awating results, due in October, of the Mayo Clinic clinical study of multifocal lung cancer; and I thank this forum for bringing it to my attention.

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Replies to "Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the..."

Hi Lijda, to respond somewhat:
1) I have nothing beyond the lungs ( based on PET scan end Nov 2021) but I do have things in both lungs and both lungs active on PET scan. While I had a 3.1cm stage 1b mass removed from right lung (end Dec 2021), and right lung has the majority of other nodules, the second largest "thing" was in my left lung. They did not want to do anything before 6 months and then I had cardiac stent so it has been on hold. But left lung thing has been stable so far. I go to Mayo in April for next scan and there has been some activity with certain nodules. I would agree with your comment on bilateral lung nodules. I found a YouTube video, Dr Blackmon, Mayo about multifocal spread to brain.
2) I did the molecular testing but was not offered any treatment. I did not have to do anything after surgery, and only radiation or surgery has been topic of potential treatments in future.
I will be very tempted to beg for a sneak preview of the Mayo Multifocal study when I go in April. On Feb 11, 2022, Mayo added "Multifocal Lung Cancer Specialty Group to their Web page.

@lijda- What, great questions. I have had swollen lymph nodes for 25 years. I've also had more than one lesion at a time in both lungs. Maybe the following will help?

https://www.sciencedirect.com/science/article/pii/S1525157817303276https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2219804/#:~:text=The%20differential%20diagnoses%20of%20bilateral,term%20smoker%20is%20lung%20cancer.