Had lobectomy in 2020 still having radiating severe nerve pain.

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.

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!

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!

It’s actually a much less complicated surgery to do wedge and better patient recovery as I now know.

So VATs is video assisted thoracic surgery — in this case 2 small Holes for camera and irrigation and 1 for surgical instruments. The wedge just means they cut a pie shaped piece of lung instead of the entire lobe. But to do that It would require their willingness to wait a hot minute for pathology to examine margins and lymph nodes (as well as nodule) before proceeding instead of proceeding to remove the entire lobe after learning the nodule itself was malignant. I didn’t get pathology report on margins and lymph nodes for 10 days. I’ve been very disappointed in that.

I had that feeling of restriction on my chest after surgery for years. It felt like I had a bad bra on that was way too tight. I thought that was from the thoracotomy scar, so surprised to hear you have restricted feeling from VATs.

I'm not sure if they can do a wedge with VATs so that might be why you had lobectomy? Or I imagine wedge via VATs might have more potential problems recovering?

I understand. Mine was VATS. I’m 70+ and I have recovered normal breathing mostly. I feel as if my Ribs don’t expand normally so I have to be deliberate to take deep breaths and I do get winded more easily. . I’m supposed to have CT every 6 months but since margins and lymph nodes were clear, I’m going to live my life assuming the surgery I had was a one and done. Because I’m not going through it again.

Oh my, good to know it took over 4 years for yours to grow to 1.5 cm. Thanks for telling me that because it really helps to know others have traveled the same path successfully.

There is just no way I am ever going under the knife again for my lungs. It is too painful. And at my age (70ish) I think it would be dangerous. I will opt for more SBRT if I can, or some ablation/freezing treatment. None of it is fun but surgery would be too much for me at my age even a wedge or VATs would be hard I think. Sounds strange to say but fingers crossed I pass on before it gets too big. LOL.

5 mos ago had a 1.5 cm Mucinous adenocarcinoma removed - along with the lower left lobe. We had watched it enlarge ever so slightly from 7mm to twice that over 4.5 years. I was told it is the “non smoker’s tumor” but he still took the entire lobe. I regret to this day not getting a second opinion because mine was located on the very periphery and all margins were clear -
and a wedge resection would have been very easy.

I have since learned that this tumor is frequently one people die with not of, because most often it is so slow growing.

All that said to say trust your own instincts and get second opinions. Your situation is different than mine. This will be your third run at it and that may be the critical difference in terms of how to react to it.

Yes. I was first diagnosed in 2000 and had a 10-12 cm tumor on the right side so my upper right and middle right lobes were removed followed by 7 weeks concurrent chemo and radiation. All was OK until 2021 when they found a 2 cm spot on my lower left lobe which biopsy showed was adenocarcinoma mucinous ( same as the old bronchial alveolar carcinoma called BAC which I had in 2000). I had that zapped with SBRT and it appears to have worked fine.

But early 2023 they found a new 1 cm spot on my right lung again. It is too difficult to biopsy so we've been watching it with CT's and seems to be stable. The PET showed a 2.7 SUV which is low energy possibly slow growing.

I am almost 70 so I am hoping it is something I can die with instead treating it. I am running out of good lung tissue.