Questions I should ask before surgery for Lung NETs?

Posted by jessicamc @jessicamc, Dec 31, 2023

I’m scheduled for a zoom call with a nurse Jan 8 in preparation for robotic surgery of a 13mm typical neuroendocrine carcinoid. I prefer to be well informed but not clear on what to ask. The dr said surgery would be about 3 hours, will probably remove 10% of the left lung. Recovery usually is two days at Mayo Jax and then discharged, would need help at home. I live alone, my son lives in another state and can only come for a couple of days. I have found a caregiver who can stay with me. I’m 77. I go,to the Y and exercise 4-5 days a week, walk an inside track 30 minutes and then 30 minutes with exercise equipment.
I’m stocking up on some frozen food items, have a grocery delivery service if needed. Do you think the caregiver needs to stay with me 24/7 or just during the day? I think I asked a similar question in a group here and one called LungNets not connected to Mayo Connect. Any tips appreciated.

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In May I had the entire lower left lobe removed for a 14mm Adenocarcinoma. I was 4 days in hospital - went home on 5th. I too had prepared food etc. I am 73. Here’s my feedback - you’ll be fine. My son and his family live nearby but I didn’t want anyone hovering over me. They walked me in, fed me lunch, saw me to my bed, and left.

I assumed I would have some arm pain on the side of the surgery but that wasn’t the case. I did have more drainage than expected from the chest tube removal before I was discharged, so I’d say before you go to hospital put a mattress protector like a beach towel or such under your sheet - and put old sheets on. That drainage stained my mattress pad. You may not have that issue but can’t hurt to prepare. I was fine to fix tea and soup and such. I had put out some water bottles on my nightstand before I left - so I was prepared but other than water and old sheets, I needn’t have bothered. Barring something unexpected, I’m confident you will be fine.

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I agree that you will probably only need minimal help after your surgery however hopefully someone (your son perhaps) will need to check in on you to make sure you are managing any pain appropriately and if there are any other unexpected side effects. You probably won’t be able drive for at least a couple of weeks so transportation needs to be considered. Also, depending on the exact location of the incision(s) you may need some help with the wound dressings.

Good luck and have a good surgery and recovery!

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I had a similar surgery (I was 80) . They would have discharged me after one night but I felt a little weak so I stayed a second night. In the second night my O2 dropped so they sent me home with night oxygen for 3 months. Instructions after VAT surgery were to not drive for a week, not lift heavy things for several weeks, not vacuum for two weeks.
They prefer one has someone stay the first night home with you. But I did not. I had my groceries brought in and I cooked for myself. Not hard to manage alone. Turning over in bed is sensitive.
Important to avoid risk of catching something after surgery so mask up and limit contacts. I was vaccinated but I tested positive for Covid 4 weeks after surgery - I developed congested cough. Fortunately, antiviral cleared it up.
Actually it was an easy surgery for me.

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Thank you so much. Good reminder about masking.

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Hi,
I had two very small typical carcinoids removed Nov. 21
They took my entire lower right lung out because of where they were located.
I was in the hospital 2 nights, got out on Thanksgiving Day.
I am an active 72 yr. Old still enjoying work 3 days a week.
I had my right colon removed in March for colon cancer. In one day, out the next! Easy recovery.
They actually found these carcinoids while doing CT’s related to colon cancer.
This lung surgery was also done robotically.
The recovery has been slow and painful. My husband took care of everything.
If I were you.. and knowing what I do…I would have a caregiver during the day for at least a week if not more.
Make sure you shower with someone close by. My husband actually got in with me the first time. It will be exhausting!
I was much more comfortable in the recliner the first few day.
While sleeping, I put a long pillow behind me on my right side. Just so I wouldn’t roll over on my side.
It was a month before I could sleep comfortably on my right side.
I am so much better now, walking, cooking and grocery shopping.
I am returning to work tomorrow.
My surgery was about 3.5 hours. I was out of it the first night. On a dilauded drip and pump.
Next morning they took IV pain meds away and the catheter was removed.
I had two chest tubes.
I got up and walked as much as I could with help.
They removed one tube that day and the other the following day.
I was told not to lift more than 5 pounds.
They gave me oxycodone for home.
I only took 9 of the 40.
I would ask:
About chest tubes and
Pain meds after surgery and for home.

I hope some of my info is helpful.
I am happy to answer any questions.
I hope it all goes well.
Margie

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@mcohan

Hi,
I had two very small typical carcinoids removed Nov. 21
They took my entire lower right lung out because of where they were located.
I was in the hospital 2 nights, got out on Thanksgiving Day.
I am an active 72 yr. Old still enjoying work 3 days a week.
I had my right colon removed in March for colon cancer. In one day, out the next! Easy recovery.
They actually found these carcinoids while doing CT’s related to colon cancer.
This lung surgery was also done robotically.
The recovery has been slow and painful. My husband took care of everything.
If I were you.. and knowing what I do…I would have a caregiver during the day for at least a week if not more.
Make sure you shower with someone close by. My husband actually got in with me the first time. It will be exhausting!
I was much more comfortable in the recliner the first few day.
While sleeping, I put a long pillow behind me on my right side. Just so I wouldn’t roll over on my side.
It was a month before I could sleep comfortably on my right side.
I am so much better now, walking, cooking and grocery shopping.
I am returning to work tomorrow.
My surgery was about 3.5 hours. I was out of it the first night. On a dilauded drip and pump.
Next morning they took IV pain meds away and the catheter was removed.
I had two chest tubes.
I got up and walked as much as I could with help.
They removed one tube that day and the other the following day.
I was told not to lift more than 5 pounds.
They gave me oxycodone for home.
I only took 9 of the 40.
I would ask:
About chest tubes and
Pain meds after surgery and for home.

I hope some of my info is helpful.
I am happy to answer any questions.
I hope it all goes well.
Margie

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Thanks for the suggestions. I prefer not having someone at night. I don’t think I would rest having a caregiver (stranger) overnights. I dread the tubes, sounds uncomfortable. I do have an adjustable bed & a body pillow. I have a built in seat in my shower and grab bars. My 95 year old mom lived with me and I put several safety features installed for her. Now I will probably rely on them. I have the Alexa emergency service subscription too so I could call for help if needed.

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@jessicamc

Thanks for the suggestions. I prefer not having someone at night. I don’t think I would rest having a caregiver (stranger) overnights. I dread the tubes, sounds uncomfortable. I do have an adjustable bed & a body pillow. I have a built in seat in my shower and grab bars. My 95 year old mom lived with me and I put several safety features installed for her. Now I will probably rely on them. I have the Alexa emergency service subscription too so I could call for help if needed.

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One thing to ask is about the coughing and breathing exercises you must do after surgery. That is very important. You want to cough up any yuck in your lungs. They gave me a pillow to hold against me and cough. It didn't hurt unless I coughed, and the meds are to help you cough without so much pain. Ask about frequency of breathing exercise, and how much to walk each day!
I never even noticed my drainage tube either of my two VAT surgeries. They removed it next day and didn't really feel anything. Hope it goes the same for you.
Once home I did not take the oxycodone they gave me, just some Tylenol. They gave me something to cover the bandage with so I could shower.

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Thanks very much. I’m making a list of questions.

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My suggestions are very similar to the other comments. One thing I did to help was to make sure that all items that I normally reach for such as milk, cream, etc. that weighs more than a gallon of milk were placed at a level so that I did not have to reach up for them. I did this in my refrigerator and throughout the house. My instructions were not to lift anything more than a gallon of milk. I started walking in the hospital day one. The nurses gave me a hard time, in a good way, because they did not normally see the patients actually walking while in the hospital. I had one issue that you might want to watch for. I was released after 2 nights in the hospital. There was no draining from my lungs at that time and everything looked great. A week later I noticed my left arm swelling which was on the same side where my left lower lung lobe was removed. I also noticed a crunchy sound and feeling in my arm, my shoulder and above my rib cage. Went to emergency room as told and they found oxygen in these areas and immediately put in a new drain tube. Stayed another 2 nights and went home. Did not experience this again. Just be prepared for very painful rib cage and swelling or bloating in that area. I was not informed that this might happen. In my case the pain got unbearable and I had no pain meds due to a backlog nation wide. I could not breath, talk, turn or do anything without the intense pain and I normally deal with pain with no problems. Another visit to emergency room where I was given two different pain meds before the pain decreased to the point I could stand it. My surgery was July 20 and I still have some pain and swelling today. I am just thankful I am cancer free now. Good luck.

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@geraldkl

My suggestions are very similar to the other comments. One thing I did to help was to make sure that all items that I normally reach for such as milk, cream, etc. that weighs more than a gallon of milk were placed at a level so that I did not have to reach up for them. I did this in my refrigerator and throughout the house. My instructions were not to lift anything more than a gallon of milk. I started walking in the hospital day one. The nurses gave me a hard time, in a good way, because they did not normally see the patients actually walking while in the hospital. I had one issue that you might want to watch for. I was released after 2 nights in the hospital. There was no draining from my lungs at that time and everything looked great. A week later I noticed my left arm swelling which was on the same side where my left lower lung lobe was removed. I also noticed a crunchy sound and feeling in my arm, my shoulder and above my rib cage. Went to emergency room as told and they found oxygen in these areas and immediately put in a new drain tube. Stayed another 2 nights and went home. Did not experience this again. Just be prepared for very painful rib cage and swelling or bloating in that area. I was not informed that this might happen. In my case the pain got unbearable and I had no pain meds due to a backlog nation wide. I could not breath, talk, turn or do anything without the intense pain and I normally deal with pain with no problems. Another visit to emergency room where I was given two different pain meds before the pain decreased to the point I could stand it. My surgery was July 20 and I still have some pain and swelling today. I am just thankful I am cancer free now. Good luck.

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That sounds like a tough recovery. I live about 1 1/2 to 2 hours from Mayo in Jacksonville. It would be challenging for me to get emergency help. You are the first person that mentioned a complication. I hope you continue to heal and stay cancer free. Being sent home with some extra pain meds would be a comfort even if not needed.

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