Had lobectomy in 2020 still having radiating severe nerve pain.

I am so sorry to hear that. My surgeon told me that my lung cancer lobectomy pain would go away in a year or so. That was in 2000. I still have nerve pain 23 years later. I've learned to block it out most of the time. Winter storms cause it to be more painful. I have a large size heat pad on the back of my chair and keep it on most of the day. The pain tends to be sharper when my back gets chilled and goosebumps.

I hope your nerve pain goes away eventually. When I complain about my scar pain to the husband, he reminds me that I am very lucky to be here.

I also had a video assisted lobectomy on my left upper lung in 2020. What a shock to have to deal with this and a pandemic…I’m not sure if you had video assisted with your lobectomy, I ask because the difference is huge and more invasive. I still feel some pain in the scars and I use a heating pad or sometimes cold and it’s very soothing but temporary so Tylenol extra strength also helps. I hope it’s helpful for you and if all else fails, keep telling yourself that the cancer is gone, it’s a good thing to remember when you get frustrated with the pain, good luck.

I had the right upper lobe removed in April 2023. Still having nerve issues but they’re annoying and not seriously painful. Was told it would take 6 months for the nerve stuff to go away. Little concerned to hear that yours is lingering. Sorry to hear it. I’m wondering when the feeling of “fullness” will go away.

Thanks for your comment. With my lobectomy they went in from my back shoulder. There’s a 7-8 inch incision. I truly hope your nerve issue subsides. After about a year the pain becomes more or less permanent. Mine comes from the incision & radiates around to my front top rib. I also have a big muscle that spasms & comes through my front rib cage. It’s like a Charlie horse & very painful. They’re calling it a Thoracotic defect from the surgery.
It does pass if I hold my arm above my head as it stretches the muscle.
The nerve pain radiates across my back & is deep & burning. I have to get on a heating pad immediately & that does help to calm the nerves down.
I have read that this nerve pain is common after that type of surgery. It was difficult finding a bra that wouldn’t aggravate it. I still dread wearing a bra.
I’m hoping that someday these issues will lessen but so far they haven’t.

Thank you for your comments. Very sorry to hear you’re still suffering 23 years later. I know that we are lucky we are still alive. It’s helpful to be able to discuss these issues with others who have experienced the same issues. I’ve recently learned that I now have 5 nodules on left & 2 on the right lung. They are all small but it’s scary. Have you had any new nodules pop up on the scans?

Just diagnosed with LUL cancer found by accident,very aggressive, but my physician is moving slow. Wanted to remove the lobe but just not ready for that, I’m scared to death no one to talk to, just found out I had diabetes,Ra and now this ,what do I do

Yes, I had about 5 little new spots show up on my right lower lobe a few years after they removed my upper right and middle right lobes. They went away on the next scan three months later. About two years ago (21 years after my original diagnosis) they found a new 2 cm spot on my left lower lobe. I had that blasted with SBRT and it has completely resolved. Then about 6 months ago they found a 1 cm spot on my right lower lobe again which we are now watching. It hasn't grown.

It is such a wild ride waiting and wondering what will happen next with this horrible disease. I certainly will keep you in my prayers mef that your new spots will resolve. < 3

So glad you reached out to us. We’ll be here for you as you go through this. With this site I myself have learned we are not alone. Take a deep breath and try to face it one step at a time. That’s what I’ve been doing. We can do this together. Big hugs to you.

Yellowstone lady it is a wild ride. Good to know about SBRT I’ve never heard about that. Did they remove your RUL & RML at the same time? What procedure was used?
I hope your new 1cm nodule disappears on its own. Than you for reaching out. It’s good to be able to talk with someone who knows what it’s like.
Big Hug to you.

They removed my RUL and RML at the same time in 2000. They did the regular thoracotomy in those days. My scar runs from my right back shoulder blade, down around my side and ends under my right breast. It's a big scar maybe 15 inches long and it still hurts especially when a new storm rolls in. I've learned to tune out most of the the nerve pain. My tumor was 10-12cm so they had to take both lobes. Right after that surgery I had 7 weeks of daily radiation with chemo every friday. Even though the tumor was gone, I did the concurrent chemo/radiation follow up to try to make sure the cancer didn't come back.

My next tumor was on the LL in 2021. Biopsy showed it to be the same kind of lung cancer at in 2000.
Radiation treatment has really improved. I was so happy I could just do two one hour sessions of the SBRT radiation treatment instead of going in every day for 7 weeks like in 2000. That tumor slowly resolved and appears to be gone. Just scar tissue remains.

Now the newest spot is a problem. They could needle biopsy it but there is a risk of lung collapse. Hopefully it will stay 1 cm and won't grow anymore. If it does start growing, we will probably do a biopsy and thermo or radioablation....or more SBRT radiation. There is a limit how much radiation the chest can take in a life time though.

Oh I know -too much info. I remember what it was like though. I was so afraid when first diagnosed. In those days there were very few support systems for LC survivors. I remember wanted to talk to someone who was a long term survivors but I couldn't find any. Now with online groups there are many longterm LC survivors. Sending prayers to you tonight for good outcomes for you mef. < 3