How was your pain after a lobectomy?

Posted by elyser @elyser, Apr 24 1:02pm

I'll be having a lobectomy (lower left) in early May and am very anxious about the post-surgery pain. Many years ago (about 35) I had a hysterectomy and remember being in tremendous pain when I woke up -- like nothing I had experienced before. That eased up while I was in the hospital but at home I had a lot of pain again. I think things have changed, the surgery itself as well as the approach to pain, but I am scared. How has it been for others?

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I had a lower right lobectomy via VATS 2 years ago this month. I was only in the hospital one night and all I ever required was acetaminophen for pain. And yes, the chest tube was the worst part but I found that my position mattered - either sitting or laying down, sometimes just moving slightly this way or that would make a difference. I did sleep in my recliner for the first few nights after returning home which really helped. I never really had issues with shortness of breath until I weeks later when I was diagnosed with a chylothorax and they went back in 2 months later to seal the leak. I've been great ever since!

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Profile picture for cmcguire10 @cmcguire10

I had an upper left lobe Segmentectomy, not a full lobectomy, in March of 2023. I had the VATS surgery. (Robot assisted surgery, or video assisted). Surgeries have come a long way! It will depend on what type of surgery they are doing for you.
Anyway, no real pain in the hospital, of course they are there doing everything for you and giving you your meds on schedule. They send your prescriptions to your pharmacy, for when you go home. Make sure you have it set up for someone to pick them up for you. You should plan all this out now before your surgery. I ordered prepared meals for my entire family for at least a week so as not to stress anyone about making meals. I bought a bed table to eat at, and I already had my adjustable bed. THAT was the best investment I’ve ever made! After you get home, the hard part is figuring out how to sleep and move. The bed was great because I could sleep propped up, I could adjust it up to almost sitting so I could just turn a bit and get out of bed. No pressure on trying to push myself up that way. That causes some pain. You can always use lots of pillows to do the same thing. You do NOT want to put any pressure on your side. Take the meds even if you don't think you have pain, because it WILl come. If you stay on top of it, it will be good. I only had to take mine for a week or so. I was told not to lift anything heavier than a gallon of milk for about 4-6 weeks. You can really hurt everything if you don’t follow the doctors orders! The best thing to do is walk! Start just around inside your home. Then a little outside. Try to make sure someone is with you to help you back if needed. Breathing is scary at first because you don’t know what to expect, but I was so happy I could breath normally after the first week! Walk and walk and walk after you feel comfortable. Best medicine in the world for healing and breathing! I now am a personal shopper and I have to walk really fast to get the order shopped and then deliver it. A lot of orders have cases of waters (heavy!), etc. I’m telling you this because I want you to see you can get back to notmal. Just be Careful and Slow during your recovery! God Bless you and I pray that you have a full and speedy recovery!🙏🙏🙏

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I'm having a lobectomy 5/1 via the open thoracotomy. Your story is encouraging.

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Another thing I found helpful for all the walking (besides the prescribed painkillers) were walking sticks....good for balance issues and they can make you work harder and longer as you are recovering. I am still using them for my COPD and emphysema pushes.

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I had the VATS left upper lobectomy in February 2023. I went in on a Friday morning and went home Monday afternoon. I chose non-opioid pain management (because of fear of apneic breathing problems) and had an indwelling thoracic epidural catheter with patient controlled analgesic - where it delivers a steady amount by pump and you can push a button for a bolus. I felt the pain management was excellent. Through the entire post-operative stay I had to have two opioid doses for uncontrolled pain; dilaudid specifically -
The first dose was required because “hemodynamic stability” (pulse, BP etc) wasn’t achieved after 8 hours in the PACU. I was intermittently awake during that period but have no recall of any pain. The second dose was required because I had a pain crisis (10+ on 1-10 scale) on day two, due to a rhomboid/scapular muscle spasm. After pain boluses, muscle relaxer, gabapentin, NSAID and heat/cold failed - I accepted the dilaudid and it worked.
Otherwise, I felt the pain was more than manageable - far more manageable than when I had lumbar laminectomy or C-section. I removed the epidural myself from home a week later and mailed it back to the anesthesiologists. I used methocarbamol, gabapentin and ibuprofen as needed for the first week of home recovery but didn’t require them more than once daily and not at all after that first week. All of this is in reference to >pain< only. The most difficult post operative change for me was fatigue and SOB. I had experienced some SOB before surgery but fatigue has never been a problem for me.
SOB is greatly improved now with time and much intervention. *Be sure to do a full course of pulmonary rehab as soon as you’re fit for it!
Fatigue, however, remains a very difficult issue for me. Extremely frustrating!!
Even though we’re unique individuals, some factors can make a big difference in how things go so here’s some of my details FYI:
I am 59 y.o., diagnosed with NSCLC Stage 1a, was a heavy smoker for 40 years, tall, average weight, very physically active throughout my life, 2 autoimmune conditions; Grave’s disease (15+years) and bronchiectasis (18 months).
Best of health and luck to you!

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Profile picture for cmcguire10 @cmcguire10

I had an upper left lobe Segmentectomy, not a full lobectomy, in March of 2023. I had the VATS surgery. (Robot assisted surgery, or video assisted). Surgeries have come a long way! It will depend on what type of surgery they are doing for you.
Anyway, no real pain in the hospital, of course they are there doing everything for you and giving you your meds on schedule. They send your prescriptions to your pharmacy, for when you go home. Make sure you have it set up for someone to pick them up for you. You should plan all this out now before your surgery. I ordered prepared meals for my entire family for at least a week so as not to stress anyone about making meals. I bought a bed table to eat at, and I already had my adjustable bed. THAT was the best investment I’ve ever made! After you get home, the hard part is figuring out how to sleep and move. The bed was great because I could sleep propped up, I could adjust it up to almost sitting so I could just turn a bit and get out of bed. No pressure on trying to push myself up that way. That causes some pain. You can always use lots of pillows to do the same thing. You do NOT want to put any pressure on your side. Take the meds even if you don't think you have pain, because it WILl come. If you stay on top of it, it will be good. I only had to take mine for a week or so. I was told not to lift anything heavier than a gallon of milk for about 4-6 weeks. You can really hurt everything if you don’t follow the doctors orders! The best thing to do is walk! Start just around inside your home. Then a little outside. Try to make sure someone is with you to help you back if needed. Breathing is scary at first because you don’t know what to expect, but I was so happy I could breath normally after the first week! Walk and walk and walk after you feel comfortable. Best medicine in the world for healing and breathing! I now am a personal shopper and I have to walk really fast to get the order shopped and then deliver it. A lot of orders have cases of waters (heavy!), etc. I’m telling you this because I want you to see you can get back to notmal. Just be Careful and Slow during your recovery! God Bless you and I pray that you have a full and speedy recovery!🙏🙏🙏

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I have been through it and as cmcguire says walk, walk and walk. Yes there will be some nasty pain but be sure to take the pain killers for this as it will make it easier for you to walk, walk and then walk some more.

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Profile picture for elyser @elyser

Thank you to @gprior, @pml and @cmcguire10 ! I really appreciate you taking the time to respond and it actually does help me to hear from people who got through it.

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That is the wonderful thing about this site! I learned so much before and after my surgery. Things to do, questions to ask, mental health, etc. Stay on with us and let us know how you are doing! We all care about and some of us say prayers for the other people on this site. Never hurts! Just remember ee are here for the good and bad. We are a community of people who are fighting this disease in one way or another and there are so many different experiences that I’m pretty sure someone will give you great advice that will fit your situation! God Bless You!

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Hello I had a left lower lung lobectomy in March of this year. I was very uncomfortable in the hospital with the chest tube but once it was taken out I had a lot less pain and mobility. Once I was home it was so much better. I agree try to set yourself up well in bed. I kept everything I was going to need on the right side of my bed to avoid moving around too much. Do take your pain medication on time. I am 7 weeks out from my surgery and while I’m not back to normal each week I see an improvement and walking has helped a lot. I hope everything goes well for you. Just one thing I would like to add be your own advocate if you are in pain or uncomfortable speak up. This was my second major surgery as I had colon cancer as well and a colon resection in January so I think my recovery may be taking a little longer. Try not to think about it or worry, doesn’t change anything and in the end it’s all ok and life goes on. Best wishes for a speedy recovery.

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Hi Lisa @lls8000. Thanks for your response. I have a carcinoma with "pleomorphic features." I found that googling "pleomorphic" gave me more negative information ("rare" "aggressive" etc.) than I wanted to deal with at this time and my surgeon believes the nodule is small enough that removal of the lobe will be effective. I don't know what kind of treatment will be next. I haven't spoken with an oncologist yet.

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Hello @elyser, I agree with the others, the modern approach to pain management is very different that it used to be. You may want to check out this discussion too: https://connect.mayoclinic.org/discussion/pain-after-left-upper-lobectomy/

Do you have a mass/nodule? Do they know what type of lung cancer it is yet?

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Hi,
I had upper right lobe removed in 2019. For me the pain was a lot the first day. I think half the pain was the chest tube. I had a collapsed lung in 1991 and had a chest tube for a few days. I had alot of pain then from the chest tube. Removing the chest tube was not painful. No pain meds after a week. As others mentioned, getting comfortable is challenging. Laughing, sneezing, and coughing hurts as well. Pain is much less after a couple days and gets better everyday. But even after a year, taking a real deep breath was not really painful, but would say a bit uncomfortable. .

I also had a wedge resection on left lower lobe in 2021 and think that was less painful than the 2019 surgery.

Everyone is different, Take the pain medication per their schedule and do your breathing exercises. I had shortness of breath because I didn't exercise enough. That was my mistake.

Wishing you the best

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