wendybird

Hi there - thanks for your response. I didn't know that monoclonal antibodies were used to treat lung cancer - is that the same as immunotherapy? I know that for her original tumor subtype (EGFR exon-19 deletion) there are immunotherapies, but she was stage 1A so wasn't offered Tagrisso. What's a CEA? And does it offer better monitoring benefits than her scans every 4 months? I had assumed that her oncologist at Dana Farber had suggested the classic standard of care for a NED lung cancer survivor.

Hi all - I wanted to say hello and how wonderful finding Lungevity and this forum have been. So many inspiring and supportive posts on here...I wish I found this forum last year when we were taking my mom through her initial diagnosis, surgery and post-op care! Our story is that urgent care doctors found a suspicious ground glass opacity in my mom's lung as an incidental finding during an abdominal CT scan last March (2022)...her doctors followed it and when it appeared to grow a few months later, she got a PET scan and was diagnosed with adenocarcinoma in June. She had a lobectomy in August at Brigham and Women's/Dana Farber (luckily, my parents live near Boston), and post surgery she was confirmed to have Stage 1A2 adenocarcinoma, pT1b, pN0, predominantly acinar. The total tumor size inclusive of invasive and lepidic components was 2.2cm, and invasive component was 1.8cm. She's set up with an oncologist at Dana Farber, and has had CT scans every 4 months after surgery (and an annual brain MRI). We also got biomarker testing on the tumor as part of a Dana Farber clinical trial, and learned that it was EGFR-mutated (though we're still trying to get the full report to find out the subtype). My mom is doing well - she recovered from surgery pretty quickly and we got clean scan results a few weeks ago that marked 1 year since diagnosis. I am incredibly grateful for the care she's received and the incidental finding that allowed us to catch the tumor at stage 1. However, I regularly struggle with anxiety due to recurrence risk. Her oncologist did not feel that post-surgery immunotherapy was appropriate for stage 1a2, and now it feels like we're just sitting through "scanxiety" for the years to come. Her oncologist originally cited that her recurrence risk was about 20%, and told us not to read too much into older clinical research because staging requirements changed in recent years (stage 1a is now more strictly measured, so older DFS/recurrence stats referring to this stage are not applicable). However, this recurrence stat was shared with us before we got her tumor tissue genetically tested. A few questions I have are: Does anyone know if EGFR mutations are associated with a higher risk of recurrence? Is having 4-month interval scans in the first couple years normal (or is her doctor more concerned due to her genetic type)? Do all recurrences automatically classify as stage IV? And perhaps more importantly - any advice on how to have hope and not live in fear? My parents are in Boston and my husband and I live further away...I've been trying to visit more, plan more family vacations, and will also be taking my mom on a mother/daughter trip later this year. However, I regularly feel guilt and anxiety at at not being much closer in case a recurrence is around the corner and fear that I'll regret not spending more time with her. I'm 30, and am so scared that she won't have a chance to know my future kids and be around for more milestones. Thanks for taking time to read; it's so helpful just to write all of this out and read your stories too.