Julie_k

I just had my first oncology appt today, post lobectomy, and I was a little surprised that even though I am EGFR positive, I wasn’t offered adjuvant targeted therapy or adjuvant therapy of any kind. I suppose I should be thrilled that they think they got it all, but instead I know that others have lowered chance of recurrence with targeted therapy and feel like I’m missing out on lowering my recurrence chances too. My cancer is 1B, pT2N0M0. They seem to feel like the B and the T2 are just technicalities, but I feel much more nervous about it. I have p.E746.A750del, exon 19 deletion, and she made it sound like because my tumor was 3cm instead of 4, and because it is A750del instead of L858R, that is why I wasn’t a candidate. But, I think from reading that I might still be a candidate… Are the side effects really terrible, and I should just go on my way and wait for my 6 month scan? They seem really sure that it won’t recur and if it does, it will in my lungs or lymph nodes. I just have a hard time believing it.

I had lobectomy 9/6, and I wasn’t coughing the first week and a half. Now I can’t have a conversation. I can’t use my spirometer without coughing. It’s worse in the afternoon and evening, maybe because I still take gabapentin at night. This much coughing is a quality of life hit, so don’t worry about complaining! I’m glad to be alive, but I’m worried this will never go away. My doctor prescribed a med that numbs the lungs and makes them less likely to react. It helps some. They also recommended Claritin to help dry things out. The gabapentin might help, but I’m not sure if that means the coughing is a nerve thing or if it’s just sedating me. Did your doc do an X-ray to check? I have small pleural effusion, but from what I’m reading, I have to kind of wait for my body to reabsorb it.

I had LLL on 9/6, and I felt like I had more energy, just pain, in the week and a half after surgery. That second week I was good for walks outside, etc. Now, the pain has subsided a good bit, but I feel like I have the flu. My temp is up to 99.7, I am way too tired for a walk outside, and I cough a lot, which wears me out more. It’s depressing because I was doing so much better before. I have talked my doc office about it, and they had me get the post op X-ray a little early and prescribed something for the cough. They also advised I take Claritin. I’m supposed to work again next week, and I just work from home, but I don’t feel ready. The X-ray showed small pleural effusion, but I’m not sure if that’s to blame. I also have lost my appetite and am having stomach problems. Negative for Covid, but maybe I caught something else? Not sure if thats helpful, but you are not alone. Oh yes, and the insomnia, what the heck is that about?? Some nights I crash and others I never ever shut down.

My doctor prescribed Tessalon Perle or something like that, might have spelled it wrong. It numbs the lungs and throat to make that spasm and urge to cough go away. Not good for a productive cough, but good for a dry cough and coughing fits. Humidifier, cough drops with menthol, coat throat tea with honey, walking outside even when I feel too tired. My cough is from small pleural effusion after lobectomy though, so it might be different. I hope she can find relief.

I wanted to update this topic as a lot has happened. I asked for a referral to surgery and was paired with an excellent surgeon at the Cancer Center. He referred me to a doctor in Pinehurst who is very experienced with robotic bronchoscopy, and that confirmed adenocarcinoma. I had surgery last Tuesday, Sep 6th, a left lower lobectomy. Recovery is going well I suppose. It's painful, but I'm breathing better now. The pain has definitely improved since the night of the surgery, which was very bad. I have received one pathology report with more to come. Most of it was very good. The margins are excellent, no lymph nodes involved. The only question mark is that they found focal pleural visceral invasion. I will have to wait until my post op to understand if that means it could be in the fluid of my lung lining or something. We are also still awaiting genetic testing on the mass. So far it is T2N0M0.

Thank you both very much for reading and responding. Lou, I noticed you are from Waxhaw. Are there are doctors in Charlotte you would recommend?

Hello - I hope it is ok to be here as I don't have a diagnosis yet. I have a 32mm mass in my lower left lobe that has been persistent over 3 months. It was mildly avid on the PET scan with no other findings. I'm a 42 year old never smoker, female. It was a shock at first to find out that it is there, but now I am a bit used to it. However, from what I have been reading, it you have ruled out infection and inflammation (which we have), it's likely going to turn into cancer if it's not already, even it's slow growing. I might be wrong about that, but I really want to have surgery to get it out rather than watch and wait for the next 40-50 years. Doc did do a bronchoscopy, but he wasn't able to do a biopsy because there were blood vessels in the way, making it high risk. Everything was normal leading up to and around the mass, however. I'm not getting a lot of information from my Dr, unfortunately. I'd like to know why a CT-guided needle biopsy isn't an option, for example, or why they can't test my blood for EFGR just to see. I even went to another guy to ask my many questions, and he was worse, just like, "well, we don't know what it is..." I wrote in using MyChart to ask if I was eligible for surgery, and the answer was "well, we usually just monitor these, but sure, we'll refer you to surgery." I'm baffled. I'm not in a small town, but I'm wondering if I should seek a clinic elsewhere. I did find a clinical trial in Texas that focuses on suspicious nodules and treats with Keytruda, so I'm considering that because I'm not that interested in waiting for a mass in my lung to act like cancer before we do anything. I'd appreciate some perspective. Am I over-reacting or having incorrect expectations of my doctor? I know it might be a hamartoma, but it seems like those often have to be removed too, so I might as well go for it while I'm still young-ish and in good health.