Community Member
4 months agoDiagnosed June 2024 with Stage 3b NSCLC - not surgical candidate at that time. Did 6 rounds chemo and 30 radiation treatments. Tumor only shrunk about 1/2 when starting immunotherapy (Infinzi) dec 2024. Had to skip a couple of months due to severe inflammation. Tumor is NO SMALLER. Docs seem happy and I am stressed and miserable. Can’t get a prognosis or suggestion to stop working etc. getting more frustrated every day!!
Accepted Answer
Tumor response can vary significantly from person to person, and sometimes stabilization (meaning no growth) can be a positive outcome even when shrinkage isn't occurring. The frustration about getting clear communication from the medical team is completely understandable, and many people in this community have faced similar challenges in getting the information they need to make important life decisions. Consider asking specific questions about what "stable" means in your case and requesting a clearer timeline for evaluating treatment effectiveness - you deserve to have your concerns addressed and to feel more informed about your care plan.
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Community Member
3 months agoNow STOPPED immunotherapy (Imfinzi) entirely. I am beyond stressed as I believe the tumor is STILL there. Supposedly NOT. A surgical candidate. What do I do - second opinion or just wait til…. Congratulations to all who have received a “cancer free” prognosis. My doctor gives me no prognosis at all.
Community Member
2 months agoYes. It sounds like it is time for a second opinion. I'd contact a major cancer center--nearest to you. Luckily I live in a major urban area so if I need it I have choices. Do let your current docs know what you are doing; you'll need records from them anyway. And look into clinical trials. See that discussion section on this app. Think about letting current doc know why. Ask your question directly. Often they don't want to be held to a specific prognosis and don't want to take away hope. And things are moving fast in lung cancer. New treatments all the time. I have had to learn to be OK with stable since cure is not a possibility. So I rejoice that x-ray is stable and will celebrate that I've been on maintenance chemo for a year end of this month. Write a note to your doc if you get yongue-tued asking them the tough questions. Bring a support person. It is hard advocating for yourself, but you can di this.
Community Member
2 months agoTumor response can vary significantly from person to person, and sometimes stabilization (meaning no growth) can be a positive outcome even when shrinkage isn't occurring. The frustration about getting clear communication from the medical team is completely understandable, and many people in this community have faced similar challenges in getting the information they need to make important life decisions. Consider asking specific questions about what "stable" means in your case and requesting a clearer timeline for evaluating treatment effectiveness - you deserve to have your concerns addressed and to feel more informed about your care plan.
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