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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@colleenyoung

Welcome @jannam. I'm glad you're here to tell us your story. I see from your bio in your profile that you had bilateral lung cancer in 2020 and metastasis were found in 2021. Are you taking a treatment break at the moment? How are you doing?

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Yes, I have been on a treatment break for a year and a half with no progression!

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Yes, my nerve pain is severe also. What are you taking for pain management?

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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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Welcome @jannam. I'm glad you're here to tell us your story. I see from your bio in your profile that you had bilateral lung cancer in 2020 and metastasis were found in 2021. Are you taking a treatment break at the moment? How are you doing?

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@mef

Yes I too had the wind sucking out of me too that’s improving.
They went in through the back but I still have peripheral nerve pain on my side right where my bra is. Some days it’s more aggravated than others. I have bought so many bras post op to help relieve that. I wear the stretchy material ones. Does nothing for my appearance but hey compromise lol.

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Yea me too. I may never go back to normal Bras.

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@pb50

Oh wow. That’s encouraging. When I bend over it’s like a vacuum sucks the air out of me. Also I’m gasping when I stand back up. But I’ve has those cramps-spasms along the side of my chest. Terrible.

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Yes I too had the wind sucking out of me too that’s improving.
They went in through the back but I still have peripheral nerve pain on my side right where my bra is. Some days it’s more aggravated than others. I have bought so many bras post op to help relieve that. I wear the stretchy material ones. Does nothing for my appearance but hey compromise lol.

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@mef

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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Oh wow. That’s encouraging. When I bend over it’s like a vacuum sucks the air out of me. Also I’m gasping when I stand back up. But I’ve has those cramps-spasms along the side of my chest. Terrible.

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@jannam

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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Gabapentin.

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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.

Jump to this post

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!!

Jump to this post

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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