JessC Posted August 16, 2022 Posted August 16, 2022 Hello to this very helpful community! I last posted here almost two years ago (but I still read sometimes when I need a reminder of all the hope ). At the time, my Mom had just been diagnosed with adenocarcinoma Stage 1B (they caught this incidentally during a scan of her heart). My mom had surgery to remove a larger mass (and part of the surrounding tissue). Then she had three rounds of SBRT radiation that targeted two smaller nodules that had lit up in her PET scan. She's been on Tagrisso since the surgery and she has follow up CT scans every three months. Everything has been pretty positive since radiation - the masses targeted with radiation have been shrinking. Other smaller nodules that are scattered around her scan haven't grown. At her last scan (August) they found a new 5-6mm nodule. Her oncologist said they wanted to watch the nodule and scan again in 3 months. He said it could be mucus(?), it could be cancer... Her medical notes say it is "suspicious" for metastatic tumor or a new primary cancer. This nodule was not present at the May scan. My family and I feel skeptical about waiting...given her history, it seems likely to us that the new growth is cancerous. After processing the appointment, we messaged the medical team and her nurse practitioner wrote back saying her "scans were stable" and that there was no need for a biopsy or PET scan at this time. My question to the community is - what has your experience been with new growths and a wait-and-see treatment plan? I realize that 3 months is not a very long time to wait, but we of course are anxious and we aren't sure if we should push harder for something else and if so, what? She's at Northwestern in Chicago which is one of the best lung cancer treatment programs in our area - it's just hard to trust sometimes. Thank you in advance for your wisdom -J
Tom Galli Posted August 16, 2022 Posted August 16, 2022 Jess, Indeed, it is hard to trust given the uncertainty surrounding lung cancer. It is my experience that the small size of the newly discovered 5-6mm nodule is driving your mom's doctor's watch and wait strategy. This size is akin to the diameter of an eraser on a #2 lead pencil, and it is a very hard target for a needle biopsy. Moreover, I have "phantom nodules" that appear and hide from one scan to the next. My oncologist always is suspicious of metastatic disease when one of these shows but given my long history of nodule waxing and waning, he is less so. A wait-and-see plan is hard to swallow but the alternative is a surgical biopsy and the risk of complication during surgery. So, all things considered, I think a 3 month re-scan is the right call. Northwestern is a very good treatment hospital. Stay the course. Tom
Judy M2 Posted August 16, 2022 Posted August 16, 2022 I've had a 5 mm nodule for a couple of years now. It's too small to be characterized on a PET scan. My oncologist just monitors it with regular 3-month scans. I'm also on Tagrisso for 30 months now (after chemo and radiation).
JessC Posted August 16, 2022 Author Posted August 16, 2022 Thank you both for your replies! We sent another message to the care team just asking for a little more detail on their thoughts and feel better about the wait and see plan now. Sometimes you just need to better understand the reasoning and those appointments take some processing time! Really helps to know that other patients have had similar experiences. Thanks again
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