Had lobectomy in 2020 still having radiating severe nerve pain.

Hello All, I am new here. I was diagnosed with NSCLC in March 2023 since then I had 2 RATS surgeries (robotic) in a little bit over 6 weeks. The first surgery was ok, I actually went to Italy between my surgeries, but the second surgery was more painful. I am still dealing with the tight bra sensation and my ribs feel funny but no pain. I am 53 yo and stage 1A3 and 1A2. My adenocarcinomas were aggressive but low PET SUV. No therapy just surveillance with CT. The tumors were clearly different since showed different mutations: EGFR ex20 and KRAS G12D. Both mutations are no easily treated but the lymph nodes (almost 30!) and the margins were clear. I walk 3/4 miles every and I am exercising at gym. I am looking now for a new job. I know I am very lucky since my situation didn’t require chemo or other treatment but the anxiety is getting worse. Only now I am fully understanding what happened and what could happen. I have a teen son and my goal is to watch him grow. Our stories give me hope so thank you!

Hello All, I am new here. I was diagnosed with NSCLC in March 2023 since then I had 2 RATS surgeries (robotic) in a little bit over 6 weeks. The first surgery was ok, I actually went to Italy between my surgeries, but the second surgery was more painful. I am still dealing with the tight bra sensation and my ribs feel funny but no pain. I am 53 yo and stage 1A3 and 1A2. My adenocarcinomas were aggressive but low PET SUV. No therapy just surveillance with CT. The tumors were clearly different since showed different mutations: EGFR ex20 and KRAS G12D. Both mutations are no easily treated but the lymph nodes (almost 30!) and the margins were clear. I walk 3/4 miles every and I am exercising at gym. I am looking now for a new job. I know I am very lucky since my situation didn’t require chemo or other treatment but the anxiety is getting worse. Only now I am fully understanding what happened and what could happen. I have a teen son and my goal is to watch him grow. Our stories give me hope so thank you!

Hi @raffi, Welcome to Mayo Connect. I'm glad that you found us. Two different mutations is rare, lucky you, right?! Ugh. The weight of the diagnosis is so difficult to deal with. Don't be afraid to reach out for help, possibly counseling or other resources that your doctors can point you toward to help too. I think it took me about two years to really process what happened and to realize what my future may look like. I'm 53 now, diagnosed ALK+ at the age of 49. It sounds like you are doing great and taking steps to keep healthy. Try to focus on the good. Your cancer was found early, the margins and nodes were clear, the doctors are taking the right steps to monitor for any other cancer growth. Those are all really positive signs! There is real hope in the lung cancer world, as treatments are getting better and better. While EGFR and KRAS have been traditionally difficult to treat, researchers are learning more all the time. There is no reason to believe that your cancer would come back, but the surgery has bought you more time. Time is everything in this game; time to spend with your son, and time for the research to advance in case you happen to need it again.
How often do you have CTs to monitor your lungs?

Raffi,
Glad you found my post. We are all here to support each other on this journey. Sounds like they found it early and that’s very good. As for the tight bra feeling it took me about a year & about 20 bras later that I finally found one that doesn’t aggravate the nerves from the surgery. I have found a few this year that work.
I too am still under surveillance. I’m 3 1/2 years post op & new nodules have developed in my left lung. There were none there before.
Another scan in January to determine growth or not.
Keep posting because many can benefit from you writing about your journey. Big Hugs!

Hi Lisa! Thank you for your reply and your kind words. I will have CT scans every 6 months for the first 3 years and then one annually. I am keeping positive and focusing on my son and my life. I hope your cancer is under control and I wish you so much joy!!

I had left lower lobectomy end of May And will soon have my first follow up CT - and will have them every six months for 5 years. I’m having a 3D & MIPS - whatever that is - because I have persistent rib & diaphram pain with deep breaths. Probably won’t get lucky but am hoping it picks up some treatable something.

I understand the bra area irritation. I found a bra on Amazon that doesnt give support for the gym, but is very comfortable. It’s called WOWENY seamless bra. If you didn’t like it, return it.

I too had rib & diaphragm pain for a couple of years but I had a lobectomy that left a big 8” scar not a robotic procedure.