Had lobectomy in 2020 still having radiating severe nerve pain.

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

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

Wow you’ve certainly been through a lot. I used to be a runner & felt like something was wrong with my lungs like an infection. I had 3 pop up side by side . They wanted to wait & see but I didn’t. My dad had died of lung Cancer. I insisted on a biopsy. I had a lung collapse so they wanted to wait. I said no I want a biopsy. Sure enough Adenocarcinoma. Surgeon said because there were 3 side by side he wanted to remove entire URL
I agreed. That was 03/2020 since then 2 popped up on right lobes but now 5 popped up on my left lobes. I feel history is repeated itself. If they grow I’m going to insist on a biopsy. Doctor prescribed Gabapentine for the nerve pain & it does help however if I stand too long it comes on fiercely so I get on a heating pad & that helps a lot. I did not require chemo or radiation with first surgery because we (actually I) caught it early.
For those out there reading this I want you to know that if something feels off get it checked out. Insist ona biopsy if large enough. Speak up & be your own health advocate. It’s that important!

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.

I also had a thoracotomy April 2020. I have similar nerve pain, burning ache radiating across my back that intensifies till it feels like it is deep in my rib cage wrapping around my right side. I have been unable to wear a bra since surgery as that increases the pain till I cannot stand it. After over a year they referred me to the pain clinic and I am taking Gabapentin 3 times a day and getting nerve block injections every three months. I did not want to take medications but I cannot work without them. I did 60 sessions of PT, acupuncture, massage, etc. They help but only for about 24 hours so I finally relented to medication and injections. They do not completely get rid of the pain but I would say it is 50% better with them and I am able to do more.
I’m so sorry you have to deal with this. My husband says something similar, at least I’m alive but day in, day out pain can really wear you down. Sometimes I just want to hear I’m sorry you’re in pain - which he says also.

I also do 4% lidocaine patch on my back everyday which really helps a lot. If you have not tried that you should and the pain doctor says I can use them daily and you insurance may cover it if your doctor tries putting a prescription through save money on buying them.

I hope you find some things that bring you some relief.

Wow you’ve been through a lot too. As for the lidocaine patches I used to use them on my lumbar but the nerve pain radiates across my mid back & I can’t reach it & don’t have anyone to put them on for me. Also, the heat here in Florida makes them not ideal to keep them on.
Between the Gabapentin & heating pad it manages the nerve pain. I don’t think the nerve block would work for me because it only covers a specific area & mine covers a lot of area. I hope some doctors are reading these comments & can come up with some solutions for us.
We all need hope.

I also had a thoracotomy April 2020. I have similar nerve pain, burning ache radiating across my back that intensifies till it feels like it is deep in my rib cage wrapping around my right side. I have been unable to wear a bra since surgery as that increases the pain till I cannot stand it. After over a year they referred me to the pain clinic and I am taking Gabapentin 3 times a day and getting nerve block injections every three months. I did not want to take medications but I cannot work without them. I did 60 sessions of PT, acupuncture, massage, etc. They help but only for about 24 hours so I finally relented to medication and injections. They do not completely get rid of the pain but I would say it is 50% better with them and I am able to do more.
I’m so sorry you have to deal with this. My husband says something similar, at least I’m alive but day in, day out pain can really wear you down. Sometimes I just want to hear I’m sorry you’re in pain - which he says also.

I also do 4% lidocaine patch on my back everyday which really helps a lot. If you have not tried that you should and the pain doctor says I can use them daily and you insurance may cover it if your doctor tries putting a prescription through save money on buying them.

I hope you find some things that bring you some relief.

Wow you’ve been through a lot too. As for the lidocaine patches I used to use them on my lumbar but the nerve pain radiates across my mid back & I can’t reach it & don’t have anyone to put them on for me. Also, the heat here in Florida makes them not ideal to keep them on.
Between the Gabapentin & heating pad it manages the nerve pain. I don’t think the nerve block would work for me because it only covers a specific area & mine covers a lot of area. I hope some doctors are reading these comments & can come up with some solutions for us.
We all need hope.

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.

It’s been 4 months since my surgery and I still have major pain wrapping around my back under my breast. It seems to be lessening but constant pin is difficult