TMC Posted March 3, 2020 Share Posted March 3, 2020 Good evening, Well we met with our surgeon last week and my husband has non small cell squamous cell lung cancer not adenocarinoma (that is what my husband thought the dr said at first) and he explained that my husband is in the gray area on whether he is a candidate for surgery (pneumonectomy). First he has to do a biopsy of some lymph nodes tomorrow to make sure it has not spread. Then a VQ scan Thursday and a brain MRI Friday. We are just trying to be patient thru all this testing. Anxious for a plan! I saw that a test result was posted in our health portal today and was called a PD-L1 Tumor Proportion score. Does anyone know what that is for? Thanks! TMC Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted March 3, 2020 Share Posted March 3, 2020 Hi TMC ... I believe that the PD-L1 Proportion Score is an estimate of how much PD-L1 protein (biomarker) is expressed on cancer cells. There are immunotherapies that target this protein in some way in order to have the cancer cell die. I believe that PD-L1 is expressed more on NSCLC than my wife's SCLC. It would appear that PD-L1 testing (staining) is common for cancer biopsies, except in the case of suspected SCLC. Sounds like I'm complaining and I am. No biomarkers were tested for on my wife's biopsy sample. My wife's nurse practitioner for her oncologist seem to imply that there was not enough tissue sample and in any case not common with suspected SCLC. Steve Link to comment Share on other sites More sharing options...
TJM Posted March 3, 2020 Share Posted March 3, 2020 Steve. They didnt do any on my large cell either. Guessing that being LC was enough of a surprise for the day. Will be a major topic of discussion with my onc tomorrow. TMC....hang in there. Waiting is the worst side effect of this disease. Your timeline, while to long, is really fairly quick. Before you know it you will be planning treatment, becoming more educated and, most importantly, actually believe that there is real hope. Till then...do your best with the anxiety. Scotch my choice... Peace Tom Link to comment Share on other sites More sharing options...
LouT Posted March 4, 2020 Share Posted March 4, 2020 TMC, You'll hear it here again and again; "waiting is the worst part of this diagnosis". All of us want to everything quickly and definitively, but it just doesn't work that way. So please be patient and spend the time doing a bit of prep. Keep a small notebook with questions you can jot down at anytime (day/night, etc.) and then bring to your doctor, this forum or both for answers. Do your best to have your husband eat healthy. I'm not talking about bean sprouts and brown rice, but a healthier diet (reduced red meat, more veggies, less sugar more fluids) will only help his body to be better prepared for whatever protocol his team decides. I also believe that exercise helps...it can reduce stress (not a bad thing right now), increase circulation and provide an outlet. Nice walks together can be a tonic. You'll soon know more about what is coming and you'll get some great shared experience here and (with the help of your new notebook) be able to ask plenty of questions of your doctors as well. Please keep us updated and we all look forward to offering whatever we can to help you and your husband through a difficult time. Lou Link to comment Share on other sites More sharing options...
TMC Posted March 5, 2020 Author Share Posted March 5, 2020 Thank you Lou!! What great advice!! Hopefully next week I will be asking for advice on all the things I need to do to prep for my husband's surgery!!! Praying hard he is a candidate for surgery. Everyone on this site has been so warm, welcoming and helpful. So glad I found this forum. Thank you all! T Link to comment Share on other sites More sharing options...
LouT Posted March 5, 2020 Share Posted March 5, 2020 My Pleasure TMC...and we'll all be ready to pitch in once you have your battle plan together. We're glad you found us too. Lou Link to comment Share on other sites More sharing options...
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