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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@lls8000

@christinesallitto, wow, I'm glad that you pushed your doc for the follow up. Sometimes we know that something isn't right and need help to determine what's wrong.
I had a cough that just didn't feel normal. I was having small spasms in my chest especially when I would try to talk. I know now that it was the enlarged lymph nodes pressing on my windpipe and larynx. I was fortunate that the first Urgent Care doc that I saw did a chest x-ray, the radiologist noted the mass in my chest, and the rest was a whirlwind of appointments. That was four years ago, and I am certainly grateful to have this extra time!

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Good for you for following through on your suspicions. We all have to be our own medical advocate.

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@christinesallitto

Hi, hope all is well. I just had the top lobe removed robotically. My weekend trip to have it done, we'll turned into a nightmare. My lung collapsed twice, was in icu for over 2 months. Then another long year of hell. But today, I'm good as new!
How about you?? Oh and my tumor was found by accident. I had an mri of my neck done, and while I was arguing where my pain was, he looked further down the report and it was noted down that I had a tumor and should see a lung dr. How ironic!! Thank god for that argument! May not have been here today!

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@christinesallitto, wow, I'm glad that you pushed your doc for the follow up. Sometimes we know that something isn't right and need help to determine what's wrong.
I had a cough that just didn't feel normal. I was having small spasms in my chest especially when I would try to talk. I know now that it was the enlarged lymph nodes pressing on my windpipe and larynx. I was fortunate that the first Urgent Care doc that I saw did a chest x-ray, the radiologist noted the mass in my chest, and the rest was a whirlwind of appointments. That was four years ago, and I am certainly grateful to have this extra time!

REPLY

Hi, hope all is well. I just had the top lobe removed robotically. My weekend trip to have it done, we'll turned into a nightmare. My lung collapsed twice, was in icu for over 2 months. Then another long year of hell. But today, I'm good as new!
How about you?? Oh and my tumor was found by accident. I had an mri of my neck done, and while I was arguing where my pain was, he looked further down the report and it was noted down that I had a tumor and should see a lung dr. How ironic!! Thank god for that argument! May not have been here today!

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@christinesallitto

I had it done robotically in 2016, I still have spasms where lung was removed, not by the scars, which is odd I think. When they come, they are super painful! I use to get nerve blocker shots, which hurt a lot, but work great. Need to find a new doctor who does them. I would look into pain management for the shot. I use to go 3 full months with no pain!!

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Welcome to Mayo Connect @christinesallitto!, Congrats on being 8 years post-surgery. That's an inspiration to people that are just starting their surgery and treatment process. it has to be difficult to deal with the ongoing pain though, after all these years. I'm glad that you've found something that helps. Did you have a full lobectomy or a wedge resection? How was your cancer found, they weren't doing screens back then?

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I had it done robotically in 2016, I still have spasms where lung was removed, not by the scars, which is odd I think. When they come, they are super painful! I use to get nerve blocker shots, which hurt a lot, but work great. Need to find a new doctor who does them. I would look into pain management for the shot. I use to go 3 full months with no pain!!

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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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