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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@waldenwoods2

I know what you are talking about. For several months--maybe even 6--after my surgery, I felt like I was wearing a tight bra. It was like having a tight band strapped around me under the breasts encircling my back as well. The thought in my head was "give it a year." That helped me tolerate it. In the meantime, I worked on building up my strength and ability to do household things. I still, religiously, take daily walks to strengthen legs, brain, heart, and lungs/breathing capacity. Build yourself up in other ways as you heal. You will heal. Pain will subside. Eat plenty of protein and vegetables. Make a tea of grated turmeric root and ginger root (simmer in a quart of water for 20 minutes). It's anti-inflammatory and can take down pain well. I use 8-hour Tylenol in the evening if necessary. The heating pad was my friend.

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Yes, it sure does feel like a tight bra. It is now more than 3 months since my VAT surgery with wedge resection and I still have that feeling on and off but only on the side of the surgery. My breast, to the side and below is "numb". I have a stiff chest with deep breathes and it occasionally still hurts if I sneeze violently. I too try to walk every day. If the weather is bad, I get on the treadmill.

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Did I really not post this to you after writing it? Apparently. But here's the answer I had for you. Walking every day needs to be part of our lives now. Not a bad habit to have at all. I call it my "oxygen flood." And I feel it is a vital part of passing all those 6-month CT scan tests that I must do.
As for that tight bra feeling a little more than 3 months since since your VAT surgery, that's practically a given. I will never know exactly what was cut or stretched inside me, but that feeling is now greatly reduced, if not barely noticeable after a year and five months after my own VATS. Tonight, however, I do feel the scar on my lower right side. I'm getting over Covid--a quick bout, my first ever. I had to take Prednisone for five days, azithromycin for 6 days (both to guard against inflammation and a possible pneumonia outcome) plus the actual anti-Covid med.--the one that works.
I am thinking that aloe vera juice could help to begin to heal your scars. And I understand that the Serrapeptase enzyme I started taking, a little over a month ago, can help dissolve those scars. However, if you are possibly on blood thinners, it would not be wise to take Serrapeptase. I have also read that Castor Oil packs (in hot, damp towels applied to the skin at the scar area can help dissolve them, but that is a mess
y prospect. So, I abandoned that.
In the meantime, just stay away from processed foods and any foods (cake and candy have to be a no because cancer likes it too much! And they inflame! And inflammation makes those scars hurt or feel tighter.).
Here's a difficult thing to solve: future mammograms. I've had one since surgery--a year ago. It was an extremely uncomfortable experience! And the radiologist had a kind of gestapo manner about her. I'd like to do mammogram a different way--perhaps an ultrasound mammogram because the standard way is inappropriate for us. If you learn about new mammogram options, let me know.
In the meantime, be patient with this whole healing process. It's not an overnight process. Give yourself time, grace and kindness. Keep walking. Keep learning. Amazingly, this experience is leading us toward a healthier lifestyle.

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@mef

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?

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Yes. I was first diagnosed in 2000 and had a 10-12 cm tumor on the right side so my upper right and middle right lobes were removed followed by 7 weeks concurrent chemo and radiation. All was OK until 2021 when they found a 2 cm spot on my lower left lobe which biopsy showed was adenocarcinoma mucinous ( same as the old bronchial alveolar carcinoma called BAC which I had in 2000). I had that zapped with SBRT and it appears to have worked fine.

But early 2023 they found a new 1 cm spot on my right lung again. It is too difficult to biopsy so we've been watching it with CT's and seems to be stable. The PET showed a 2.7 SUV which is low energy possibly slow growing.

I am almost 70 so I am hoping it is something I can die with instead treating it. I am running out of good lung tissue.

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@yellowstonelady

Yes. I was first diagnosed in 2000 and had a 10-12 cm tumor on the right side so my upper right and middle right lobes were removed followed by 7 weeks concurrent chemo and radiation. All was OK until 2021 when they found a 2 cm spot on my lower left lobe which biopsy showed was adenocarcinoma mucinous ( same as the old bronchial alveolar carcinoma called BAC which I had in 2000). I had that zapped with SBRT and it appears to have worked fine.

But early 2023 they found a new 1 cm spot on my right lung again. It is too difficult to biopsy so we've been watching it with CT's and seems to be stable. The PET showed a 2.7 SUV which is low energy possibly slow growing.

I am almost 70 so I am hoping it is something I can die with instead treating it. I am running out of good lung tissue.

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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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@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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Oh my, good to know it took over 4 years for yours to grow to 1.5 cm. Thanks for telling me that because it really helps to know others have traveled the same path successfully.

There is just no way I am ever going under the knife again for my lungs. It is too painful. And at my age (70ish) I think it would be dangerous. I will opt for more SBRT if I can, or some ablation/freezing treatment. None of it is fun but surgery would be too much for me at my age even a wedge or VATs would be hard I think. Sounds strange to say but fingers crossed I pass on before it gets too big. LOL.

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@yellowstonelady

Oh my, good to know it took over 4 years for yours to grow to 1.5 cm. Thanks for telling me that because it really helps to know others have traveled the same path successfully.

There is just no way I am ever going under the knife again for my lungs. It is too painful. And at my age (70ish) I think it would be dangerous. I will opt for more SBRT if I can, or some ablation/freezing treatment. None of it is fun but surgery would be too much for me at my age even a wedge or VATs would be hard I think. Sounds strange to say but fingers crossed I pass on before it gets too big. LOL.

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I understand. Mine was VATS. I’m 70+ and I have recovered normal breathing mostly. I feel as if my Ribs don’t expand normally so I have to be deliberate to take deep breaths and I do get winded more easily. . I’m supposed to have CT every 6 months but since margins and lymph nodes were clear, I’m going to live my life assuming the surgery I had was a one and done. Because I’m not going through it again.

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I had that feeling of restriction on my chest after surgery for years. It felt like I had a bad bra on that was way too tight. I thought that was from the thoracotomy scar, so surprised to hear you have restricted feeling from VATs.

I'm not sure if they can do a wedge with VATs so that might be why you had lobectomy? Or I imagine wedge via VATs might have more potential problems recovering?

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So VATs is video assisted thoracic surgery — in this case 2 small Holes for camera and irrigation and 1 for surgical instruments. The wedge just means they cut a pie shaped piece of lung instead of the entire lobe. But to do that It would require their willingness to wait a hot minute for pathology to examine margins and lymph nodes (as well as nodule) before proceeding instead of proceeding to remove the entire lobe after learning the nodule itself was malignant. I didn’t get pathology report on margins and lymph nodes for 10 days. I’ve been very disappointed in that.

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@pb50

So VATs is video assisted thoracic surgery — in this case 2 small Holes for camera and irrigation and 1 for surgical instruments. The wedge just means they cut a pie shaped piece of lung instead of the entire lobe. But to do that It would require their willingness to wait a hot minute for pathology to examine margins and lymph nodes (as well as nodule) before proceeding instead of proceeding to remove the entire lobe after learning the nodule itself was malignant. I didn’t get pathology report on margins and lymph nodes for 10 days. I’ve been very disappointed in that.

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It’s actually a much less complicated surgery to do wedge and better patient recovery as I now know.

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Hello All, I am new here. I was diagnosed with NSCLC in March 2023 since then I had 2 RATS surgeries (robotic) in a little bit over 6 weeks. The first surgery was ok, I actually went to Italy between my surgeries, but the second surgery was more painful. I am still dealing with the tight bra sensation and my ribs feel funny but no pain. I am 53 yo and stage 1A3 and 1A2. My adenocarcinomas were aggressive but low PET SUV. No therapy just surveillance with CT. The tumors were clearly different since showed different mutations: EGFR ex20 and KRAS G12D. Both mutations are no easily treated but the lymph nodes (almost 30!) and the margins were clear. I walk 3/4 miles every and I am exercising at gym. I am looking now for a new job. I know I am very lucky since my situation didn’t require chemo or other treatment but the anxiety is getting worse. Only now I am fully understanding what happened and what could happen. I have a teen son and my goal is to watch him grow. Our stories give me hope so thank you!

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