Judy M2 Posted October 24, 2022 Share Posted October 24, 2022 (edited) UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome. ORIGINAL POST: Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her. I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma. It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant. November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor. On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning. In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable. I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never. Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes. For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you! Edited November 1, 2022 by Judy M2 Added 11/1/22 update LilyMir, Susan Cornett, Scruboak and 3 others 6 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 25, 2022 Share Posted October 25, 2022 Judy, What a wonderful post! It is full of hope and really demonstrates the impact of newly introduced treatments. Isn't NED neat? So I'm a die hard Phillies and Eagles fan. I was born and raised in Philly but stayed a loyal fan while the Army sent me here, there, and everywhere. I live in a Dallas suburb, and my neighbors do not appreciate my protestations of their vaunted Cowboys. So I'm in full agreement with your wise and learned physician. He's rooting for the right teams and teeing up the best treatments for you! I'm betting your PET/CT Halloween reveal is a NED treat! Stay the course. Tom Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted October 25, 2022 Share Posted October 25, 2022 Judy That's a brilliant post and so full of hope for the rest of us,I hope you get great results on Halloween well done All the best Take care Justin x Izzy 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted October 25, 2022 Author Share Posted October 25, 2022 Thanks, Tom and Justin. I wanted to let folks know that there can be life after a diagnosis of lung cancer. Congratulations to your Phillies, Tom. After the Padres beat the Dodgers we were hoping for more, but sadly it was not to be. Tom Galli and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted October 25, 2022 Share Posted October 25, 2022 We are lucky to have you here Judy, I really appreciate your insights, advice and positive attitude. Here's to so many more Halloweens with NED! Judy M2, Justin1970 and Tom Galli 2 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted October 27, 2022 Share Posted October 27, 2022 Happy Cancerversary to you! And many more! Justin1970, Tom Galli and Judy M2 2 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted October 28, 2022 Share Posted October 28, 2022 What a joyous post. Thanks, Judy, and congratulations. Fingers crossed for a completely uneventful Monday. Tom Galli, Judy M2 and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted October 28, 2022 Share Posted October 28, 2022 Judy, A wonderful story with an excellent outcome; CONGRATULATIONS!!! NED is great and I hope you carry that monicker for a long time. Lou Judy M2 and Tom Galli 1 1 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted November 10, 2022 Share Posted November 10, 2022 Judy - Congratulations! Such wonderful news! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
HopeRynagh Posted January 3 Share Posted January 3 Hi there, just read your piece Judy m2 and it gives me great hope and heart. I love getting positive news. In my country no repeat pet scans just Ct. I have to be happy with them should I ask for a repeat. It's been 2 yrs for me. I'm of course so happy with that. C T thorax and upper abdomen. Every 6 months I have them. Quote Link to comment Share on other sites More sharing options...
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