Deeba2702 Posted October 20, 2020 Share Posted October 20, 2020 Hello everyone my name is Dayanna. It’s unfortunate that these are the circumstances in which I’m introducing myself to you all , but I’m thankful that you all are here to help one another. I was diagnosed with Stage 1A2 NSCLC mutation in EGFR. ! My oncologist is offering chemotherapy after upper left lobectomy surgery because of characteristics that were found in the tumor. They say that there were indications of Lymphovascular invasion. EGFR mutation in exon 19 with TP53 and RB alterations they say the last is an indication of the desire to switch to SCLC. If any of this makes sense or sounds familiar, I want to see if anyone has any feedback or experience with early stage NSCLC and recurrence. I’m trying to make up my mind about the chemotherapy because they can’t promise me that the tumor might have microscopically made it’s way somewhere else. Link to comment Share on other sites More sharing options...
GaryG Posted October 20, 2020 Share Posted October 20, 2020 Hi Deeba: Welcome to our place. Sorry to learn about your situation and I hope you find answers to all your questions going forward. I am not familiar with your mutation so I cannot offer any meaningful comment. However it is common that patients take chemo after surgery because doctors have no way of knowing if you are totally cancer free. All the best. Link to comment Share on other sites More sharing options...
TJM Posted October 20, 2020 Share Posted October 20, 2020 Deeba I was essentially given the same option, plus option for radiation. I opted to do both. If I could go back I would drop radiation but not Chemo. Peace Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted October 20, 2020 Share Posted October 20, 2020 Deeba, Welcome here! Unfortunately, adenocarcinoma with EGFR mutation, Exon 19, with TP53 and RB alterations does show a tendency to mutate to SCLC. Here is a paper from the NIH that explains the rare transformation. I know of one survivor who has this circumstance. Fortunately, it is rare. Let us hope your surgery and post surgical chemo deals with your disease. In fact, the reason for post surgical chemo is to deal with stray cancer cells that may be migrating in your blood and lymphatic systems. So if your doctors recommend this treatment, I'd take it. What are the chemo drugs your doctors are suggesting? Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted October 21, 2020 Share Posted October 21, 2020 Hi Dayanna and welcome. i'm not knowledgeable about EFGR mutations, but there are some here who are, such as Tom G, above. You'll probably hear from some others. Lung cancers generally, including early stage ones are pretty susceptible to recurrence. I also know that cancers with different biomarkers behave differently, including the way they respond to specific treatments. It sounds like you have a rare type. Is your oncologist experienced with the type? Not just EFGR, but the specific alterations? You might want to consider a second opinion. Four years ago I had lung adenocarcinoma stage 1a, KRAS mutation. Pretty cut and dried--treatment was lobectomy with nothing else recommended (except surveillance CTs). But eariler I had an unrelated stage 3 gynecologic cancer that was a rare type, in fact there were no published studies at that time about how to treat it. My oncologist proposed a "standard treatment". I sought out a specialist in rare gynecologic cancers, who had experience with the type. She recommended some chemo in addition to the chemo/radiation my onc recommended. I had the additional chemo and I'm glad I did. I've now been NED (no evidence of disease) for 9 years on that cancer which had a "dire prognosis". So I guess I'm an advocate for second opinions, especially in rare cases. All the best to you, Bridget O Link to comment Share on other sites More sharing options...
Lisa Haines Posted October 21, 2020 Share Posted October 21, 2020 Hi Deeba I also think it's quite wise for all lung cancer patients to highly consider having adjuvant chemo (and/or radiation). I think it's the best way to get any possible cells that "may" be left behind after surgery. Finding lung cancer at an early stage is such a plus and if I had been the fortunate to have found mine early, I would have done whatever I could to get every bit of it. Here a good article from Hopkins about this topic, maybe if will be helpful to you. https://www.hopkinsmedicine.org/breast_center/treatments_services/medical_oncology/neoadjuvant_adjuvant_chemotherapy.html I wish you the very best and hope very much your surgery will be totally successful. Take care and please let us know how it goes and what you decide to do. Lisa Link to comment Share on other sites More sharing options...
Deeba2702 Posted October 23, 2020 Author Share Posted October 23, 2020 Good Morning Everyone, I’m really grateful to all of you for providing me all this information. I’ve been doing some research and speaking to other MD’s and NP’s about this and like many of you said the option of chemotherapy is offered to make sure we get rid of any cells that might have gotten around after the surgery. I had a VATS robotic assisted upper left lung lobectomy on 9/17. I’m all recovered now thankfully. I have decided to go ahead and do the chemotherapy my Oncologist spoke to Tumor Board about my case and some of the MD’s recommend I just get the check up every 6 months with a CT scan , but others were concerned about the mutation and the characteristics of the cells in the tumor. I’m going to be on Cisplatin and Pemetrexed. I’m only doing 4 sessions of which I’ll start on Tuesday. I’ve been informed of the side effects , but my MD says some patients don’t experience them all, hopefully I’m one of those wish me luck! Link to comment Share on other sites More sharing options...
Deb W Posted October 23, 2020 Share Posted October 23, 2020 Hi Dayanna, I thought I hit send on this one days ago. I was diagnosed with Adenocarcinoma Stage 1B in March 2019. I was not offered chemo or radiation after surgery because several lymph nodes were checked and came back clear. I now know more and would have had chemo for sure. My recovery went well. I was back on the tennis courts and doing everything I did before cancer within 3 months. I had follow-up scans that showed some inflammation, but it was determined that it was scar tissue from the lobectomy. I went for my yearly scan in April 2020 and I was told I had Stage IV with 2 lymph nodes positive for cancer and the pleural area was inflamed (couldn't get enough tissue to test it for cancer). It turns out that there must have been micro metastasis which could not be detected. So, if I knew then what I know now, I think I would have demanded a course of chemo after my surgery. The good news is thatI have been in remission since August and I'm still be treated with Pemetrexed and Alimta (they call it maintenance) to prevent any cancer cells that might be still swirling around. I believe you'll get through the chemo just fine. Maybe you'll be one of the lucky ones and not have any - there are plenty of people that don't get them. , Deb Link to comment Share on other sites More sharing options...
LouT Posted October 24, 2020 Share Posted October 24, 2020 Deeba, You've already gotten great advice and sharing from my fellow forum family members so I'll just welcome you to the site and let you know that you can always return and ask any questions you'd like or just get support when you feel the need for it. Again, welcome and please keep us updated on your progress. Lou Link to comment Share on other sites More sharing options...
Deeba2702 Posted October 24, 2020 Author Share Posted October 24, 2020 Hi Deb, Thanks so much for sharing, congratulations on being in remission! The personal experiences and advise helps me feel my decision is the right one because I was afraid of what chemotherapy might do to my body long term, but ultimately I want to be recurrence free for as long as I can be. I too had 5 lymph nodes come back negative. Thanks for the good wishes on having minimal to no symptoms 😊. Link to comment Share on other sites More sharing options...
Deeba2702 Posted October 24, 2020 Author Share Posted October 24, 2020 LouT, Thanks for welcoming me to the site! I’m very lucky to have found you all, I will keep you all updated on my chemo journey, again I’m very thankful for you all because I have whom to talk to about this and get a sense that I’m being really understood. You all have a great weekend! Link to comment Share on other sites More sharing options...
Deb W Posted October 24, 2020 Share Posted October 24, 2020 Oops...I meant Alimta and Keytruda for maintenance!🤥 Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.