[Unexpected News]

Hi all-

Sorry it's been so long since I posted. Since my original posting I had two biopsies, one of the armpit/breast area and another of my lung. Luckily they both came back normal! I was so relieved to find this out. My oncologist says I am now in maintenance/monitoring scanning. Since I found this out I have been very busy spending time with family and friends, going back to a "normal" lifestyle. Now I just need to focus on building up my lung function so I can get back to an active lifestyle again. Thanks all for your thoughts and posts, it means a lot to know there's a community out there to turn to. I hope others are having luck and getting some good news as well!

[Unexpected News]

I recently introduced myself in the "Introduce Yourself Here" forum, here is a short synopsis: my name is CJ and I was diagnosed with NSCLC in August of 2016. I did oral chemo, Alectinib, for four months then moved on to IV chemo and radiation for 6 weeks. Had issues with coughing up blood due to my bronchial artery being torn by one of the tumors. They attempted to repair it but it did not work so they were discussing whether to remove part or all of my left lung. Had a PET scan on 6/30 and my team was going to meet at their weekly "tumor board" and discuss my case and I was supposed to hear a recommendation yesterday from the surgeon. Well, I did not hear from them yesterday but I had an appointment with my oncologist today. He said there was new activity on my PET scan in my left axillary lymph nodes and they need to do a mammogram and breast biopsy. If that is negative there was also increased activity in the lymph nodes of my left hilum so they will then biopsy that. Depending on what the results of the biopsies are they will determine a course of treatment; Alectinib for a positive axillary biopsy and surgery for a positive hilum biopsy...I'm still processing everything cause I was not expecting to have to have a breast biopsy and I'm in a bit of shock.

[Weighing Choices]

Thanks for the reply Susan. My name is actually CJ, lily is just my favorite flower  If they decide not to take out my left lung then the only real treatment plan that has been proposed to me is the "wait and see" plan. Wait a few months and have another PET scan and if it shows changes then decide from there. To me that's a little concerning that they'd wait that long to do another PET scan, especially since the last one done, on 6/30, show the new activity in my lymph nodes in the left armpit. I know people can and do live well without one of their lungs, the thing that's making me anxious is that all of my doctors seem hesitant to tell me whether they think it will actually improve my breathing. Again, I know there are no guarantees, but give me an opinion! I mean, they're the medically trained people and I'm not, I'm going to them for a reason. In the meantime there are things in my life I'm trying to plan like annual vacations and my wedding in February so I'd like to know sooner rather than later and the whole "wait and see" game is getting old. Thanks for the personal story, it makes me feel better about possibly having the surgery.

[Weighing Choices]

I was diagnosed with NSCLC of my left lung in September of 2016. I started treatment with an oral medication which helped a lot and then in January of 2017 moved on to IV chemo and radiation for six weeks. Once that was complete I started coughing up significant amounts of blood and discovered the tumor in my lung had torn a hole in my bronchial artery. I was in and out of the hospital for about a month dealing with it and continued to cough up blood until early June 2017. Because of the coughing and the blood and the fact that the procedures they did to try to repair the hole didn't work they started talking about removing my left lung. Two PET scans later and there's still "activity" in my left lung and now there's additional activity in the lymph nodes in my left armpit. They can't tell for sure whether it's cancer or inflammation, apparently. My oncologist, surgeon, radiation oncologist, pulmonologist, and other specialists are discussing my case today to make a recommendation about whether I should have the lung removed or not. I am super anxious because it's a huge surgery, I'm only 30 years old, and there are obviously no guarantees whether it will improve my breathing/quality of life.