Had lobectomy in 2020 still having radiating severe nerve pain.

Posted by mef @mef, Aug 11, 2023

Had upper right lobectomy in 2020. I’m still having severe radiating nerve pain. Anyone else having this?

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@pb50

That’s the rumor. I just don’t think I will ever fully recover. I’m pretty sure I have intercostal muscle damage. I think the nerve pain has resolved. But the muscle pain on deep breathing is only somewhat improved. I’m in month 10 post op so.. not expecting much more.

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My chest pain & muscle pain took longer than that to subside. When I would bend over from a seated position my muscle would contract like a Charlie horse only in the chest not leg.
Give it some more time. It’s a journey don’t lose hope.
Hugs to you.

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@jannam

My doctor said he would’ve taken my whole left lung if I didn’t have tumors on the right lung. Being aggressive can save lives!!

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That’s the rumor. I just don’t think I will ever fully recover. I’m pretty sure I have intercostal muscle damage. I think the nerve pain has resolved. But the muscle pain on deep breathing is only somewhat improved. I’m in month 10 post op so.. not expecting much more.

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@pb50

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.

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My doctor said he would’ve taken my whole left lung if I didn’t have tumors on the right lung. Being aggressive can save lives!!

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@mef

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!

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For my severe nerve pain, I use a combination of gabapentin and Cymbalta. The pain is managed very well!!

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@yellowstonelady

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.

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For the nerve pain, have you ever tried the combination of gabapentin and Cymbalta?
It manages my nerve pain very well!!

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Yes…… what do you take for pain management? I am on a combination of gabapentin and Cymbalta which manages the pain well!

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You had surgery in both lungs without video assistance…that’s huge what you had done and I have no doubt that you have pain, that’s a lot of incisions that are healing now. I had a lobectomy for my upper left lobe in 2020, it was video assisted and in 2022 I had a partial lobectomy for another cancer in right lower lobe, I can’t have anymore surgery due to weak lungs and health. There’s a lot of pain when healing and for sure you have lots to deal with, I hope you recover well and get back to normal soon, best wishes.

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Good morning..yes my surgery was robotic. I have had the same feelings about if I would go thru this again but it's probably like childbirth you forget the pain as time goes by. This site has been wonderful and assuring and feel its helping with recovery.
Let's hope we won't ever have to go thru this again but it's nice to be able to share notes.

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@allstaff

Thank you for the info. Im really happy about this support group. This time is so different that the first time so I worry that something is wrong as sometimes answers from doc or pa I have felt like I was an annoyance. This site has reassured me that I'm ok. Having surgery at 78 vs 65 is very different

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I agree this group is amazing & informative. Glad you found us. I understand your comment about the age. I was 66 when I had mine done. The pain post op was awful & I think to myself I don’t think I can go through that again. I’m coming up on 4 years since surgery. It’s people like you that gives me hope that I could if I had to. You’re so positive after having to deal with that twice. Thank you for that.

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@allstaff

Wow! mine is 5-1" incision and one that is about 5 inches where the drainage tube was.

The 2011 is 4 1 " incisions.

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Oh so you had the smaller incisions. Was yours robotic mine wasn’t. A 5 “ chest tube incision? Mine is a small circle puncture.

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