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I met with my thoracic surgeon today and I've been diagnosed with a 4 cm typical carcinoid tumor. It's really the best news I could have gotten. I feel blessed to have a diagnosis, a treatment plan, and a surgeon i trust.  I'm scheduled for a robotic lobectomy on the bottom lobe of my right lung on June 11. I've learned so much from all of you and this site. I've gotten so many answers to questions i couldn't find anywhere else or would be asked anywhere else.  Thank you for giving me this place.....   

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It’s a strange feeling to be relieved to get diagnosed but I know the feeling.  Living with knowing but not really knowing is stressful.  Having a clear path forward allows you to focus on that and worry less.  I had an upper right lobe lobectomy a few months ago.  If you have any questions or concerns fire away.  W

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Curt can you talk about recovery from surgery? How long in the hospital, how long to recover at home, out of work?  

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Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  

1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 

2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  

3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 

4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  

5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  

6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    

7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  

8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  

9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.

10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   

I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   

I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   

 

 

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Hi Brian-

Its hard to believe in our little club the words tumor and good news can occur in the same sentence.  One step at a time, let’s do the happy dance for this milestone.  

Keep us posted along the way!  Will keep the prayer warriors going! 

Michelle

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16 hours ago, Curt said:

Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  

1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 

2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  

3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 

4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  

5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  

6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    

7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  

8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  

9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.

10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   

I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   

I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   

 

 

This is great information Curt, thank you for being so open about it, it really helps.  

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Hi Brian, My experience was, if anything, easier than Curt's. I had a lower right lobectomy by VATS. Robotic should be comparable to VATS in recovery time and challenges. I was discharged the day after my surgery with a chest drain tube in place since I hand an ongoing air leak. I had the tube in place for about 10 days. I had some pain and used opiod pain mads, but the pain mostly disappeared  once the tube was out. Any surgery involving general anesthesia is serious, but as surgery goes, this one was pretty easy.

Curt has given you some great suggestions and I want to emphasize a few of them. WALK. I was up and walking the same day as my surgery. When I got home, I walked around my neighbohood with my chest tube and drain bag concealed under a big raincoat. Fortunately I live in Oregon where any kind of rainncoat is common!  Get a wedge pillow. You'll be more comforable iwth your whole upper body elevated to 45 degrees. At first I tried to do this wth various pillows I had, but I only ended up with a sore neck. The wedge was a relief!  Use the spirometer to keep your lungs inflated. Breathe deeply,  Cough.  Think good thoughts! 

Ths wll probably be a lot easier than you think.

Good luck to you!

Bridget O

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Brian,

It is good to hear that you have something to shoot for to confront this.  Curt gave you a great set of points on the surgery, so I won't repeat them here.  I am three weeks past a lower right-lung lobectomy and like Curt I did a load of exercising pre-surgery (actually increased everything I already did) and ate healthy and well to make sure I was ready for surgery.  Curt is right about the opiates causing constipation so I started taking Colace (p/u at any pharmacy OTC) nightly a few days before the surgery and informed them to keep it going in the hospital.  It really helped my body to stay normal through the dilaudid pain med.  Also, for the first few days, take all your prescribed pain meds, if you want to know why just read my update post "Lou vs the Chest Tube".  

Like Curt, I started walking as soon as I got home.  walking all around my house, the second week home I got back on my treadmill and could manage 2 miles at about 2.5mph.  As of this week, I'm now doing a straight 5 miles at 3.7mph and while I can feel a bit more winded than usual I get through it pretty well.  Of course, after I do that and the home gym I'm ready for a good nap (seems to be my way since the surgery).  I have a way to go to get back to 6-7 miles at 4+mph, but it is progress.

Mix good rest with hard work, use the darned spirometer until you see those numbers go back up (pre-surgery I could do 3500, but now have just managed to reach 2750) and you'll do better than you thought.  Like Curt, I was scared to death of this going in, but it wasn't near as bad as I imagined it would be.

We'll be rooting for you...

Lou  

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Michelle

Glad it helped. We sure need each other to recover from this. I do feel pain and am sometimes winded, but those issues diminish a little bit more with each workout. I look forward to hearing your progress. 

Lou

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