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new to the forum about to have surgery need some advice


Femie

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Diagnosed with stage 4a NSCLC officially on March 2015 and apparently the only one with my kind of mutation in the whole world.  Did the carboplatin/avastin chemo for a year and switched to Gleevec/Imatinib since April this year.  About to "finally" undergo surgery to take out upper left lobe and was wondering If anyone had one and would like some pointers on what to do and any post surgery issues.

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Hi Femie,

Welcome! I'm new this site too. I had a right lower lobectomy.. Fortunately Stage 1, so no chemo. Do you know whether your surgery is going to be VATS (laparoscopic, minimally invasive) or open? I had VATS surgery just about 4 weeks ago and I'm feeling pretty well now--still some tenderness around the incissions. I'm back to many of my prior activities except I can't lift over 10 pounds or go in the swimming pool yet. 
 

One thing I suggest is getting a foam bed wedge. I think it's common to advise people to sleep with their head raised 30 degrees after lung surgery because it makes it easier to breathe and I also think you're less susceptible to pneumonia. I tried for the first couple of days at home to prop myself with one of those "reading in bed" type of pillows but ended up with kinks in my neck. Got a bed wedge and it was MUCH more comfortable. A wedge that's 12 inches at the high end will give you about 30 degrees. Mine cost about $40 at a locan medical equiment supply store. 

I'd be happy to answer any questions I can.

Bridget

 

 

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Femie,

Unfortunately, I am kind of an expert in lung cancer surgery.  I didn't have one, I had 4!  So, let's get into it.

Pillows - check.  Audition them at the local mattress store before you get admitted for surgery.  You'll need to sleep elevated.

Sleeping - will be a problem when you get home.  Ensure you leave with a sleeping aid.  My most difficult sleeping experience was staying asleep.  I'd sleep for about 2 hours then couldn't fall back to sleep because of the pain. I finally settled on taking a couple of Benadryl tablets (after consulting with my Doc) to help me stay asleep.  I also got a script for Ambien.

Getting out of bed - you'll need to engineer a new solution.  My pre-surgery method of hoisting myself up by my elbows failed miserably.  I need to learn how to roll out to a standing position.  Practice before surgery.

Lifting - plan on not lifting anything heavier than a tooth brush with the arm closest to the incisions.  Plan on feeling pain when you do.  I am right handed and had a right pneumonectomy and consequently a lot of unnecessary pain.

Dressing assistance - it took me about 10 days to put on a dress shirt unassisted.  The same with a t-shirt.  Anything that required lifting my arms or bending over to tie shoes hurt.  

Showering or bathing - not until staples or sutures are removed.  Plan for it and you may need home assistance changing your surgical dressing, depending on the type of surgery and or dressing.

Most important.  My experience was a worst case.  The modern surgery methods that are minimally invasive will cause far less discomfort but be prepared for some.

Stay the course.

Tom

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I think you have been given great suggestions by Tom and Bridget. I had VATS surgery and my upper left lobe removed in 2007. I think for everyone the recovery will be different but mine was a lot easier than I expected. I had my surgery on Friday, was released from hospital on Monday morning, and took a 1 1/2 hour flight home that night. The next morning I had someone drive me into the office for a 20 minute visit. Now I still needed plenty of help and rest and certainly could not run a marathon. I think you should prepare to not go up stairs for the first few days. Even a couple weeks later I had to go for a Doctor's appointment and had to park a little farther away. I had a difficult time walking the distance. Just take it easy and let your body heal.

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Thank you all for your responses.  My surgery is going to be done via VATS.  My oncologists actually said to just wait till my the chemo pill I am on stops being effective or when my scans show some negative results to go into surgery.  My cancer gene mutation is mostly found on GI or Blood cancer patients and apparently I am the only lung cancer patient who has this mutation so there is no precedent as to how long this pill is going to last.  Surgery was not in the original treatment plan.  After a year on chemo and 7 months on the Imatinib (targeted therapy pill) they did another biopsy in September that showed my lymph nodes being non-malignant so we have been discussing back and forth on doing the surgery.  I would like not ever have to undergo surgery but my last scan (3 months intervals) this month showed no movement at all on the measurements.  Usually there is decrease in size even if it's just a 0.1cm.  Anyway all your tips are greatly appreciated especially about the wedge pillow.  It's just my husband and me without any support at home and we have 6 year old twins.  I am just worried how incapacitated I will be post surgery and for how long.  But this is our new normal now since I have been diagnosed back in April of 2015.  How long after surgery do you get back to normal activities i.e. driving, doing chores and going back to working?

 

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Good morning.  Check with your surgeon on the limitations regarding normal activities.  I had a lobectomy the old-fashioned way, and I was off work for 4 weeks.  I wasn't able to lift anything over 10 lbs for 90 days.  I would say that you should listen to your body.  Those first few weeks without the top half of your lung will get your attention.  The day that I could walk around the hospital floor 3 times felt like a marathon.  Your remaining lung will expand to fill the space, but you will notice some diminished capacity.   

I also wholeheartedly agree with the wedge pillow.  I was fortunate that one was provided to me in the hospital and was able to take it home.  I had also given my husband grief about buying one of those "old people" beds that raises/lowers the head, but I sure was thrilled to have it post-surgery.

My fingers are crossed for a successful surgery and a quick recovery.

 

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HI again Femie,

My surgery lobectomy was VATS and my experience after surgery was much easier than Tom's. I was released from the hospital the next day, with a chest tube in place. I did have pain, but it was not as bad as I expected. I had to be careful how I moved or I felt I was being stabbed in the side. So I had to move carefully. But I was able to get out of bed, get dressed and so forth , carefully, but without help. I was able to sleep OK, with the help of oxycodone. I was able to walk a couple of blocks as soon as I got home from the hospital. Had to wear a great big raincoat to cover up my tube and drain bag. My energy returned pretty quickly.. I 'm 71 and was in pretty good shape (not atheletic but active) before the surgery.. I am now just over a month past surgery and rarely need anything for pain. Yesterday I walked more than 3 miles. I was able to drive as soon as I got off the oxycodone, which was shortly after I got the tube out.  The biggest limitation I find is lifting. Af first the limit was 5 pounds and I didn't feel like I wanted to lift more than that anyway. NOw it's up to 10 and it's a drag because I feel like I could do more, but I'm being careful..

My recovery has been easier than I thought it would be. Everybody is different. Listen to your doctor and to your body and be as active as you are able to. Best of luck!

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Hello this is Michele.I had my surgery DEC 14 vats lower lobe.stayed in hospital 4 days. I have nsc adenacarcomo. Stage 1 but further report has not come back yet. Im actually recovering well.having no breathing issues walked for 30 min today and the only part of me that was tired was my legs I felt I over did it. I went today for xray which they said was good. I had a problem when the surgeon assistant took out my stitches were the chest tube was which did hurt but he put Sterle strip on said OK your good to go and when I got up fluid poured all over my pants and puddle on floor. Of course it freiked me out he came back in with string full of glue and glued and bandaged me up. Now its a little uncomfortable; I hope its OK. I go back in 2 weeks for report on pathology and follow up. Each day has been different tomorrow should be better. Thanks for listening and Merry Christmas!

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I'm glad to hear that you're surgery is done,Michele. Sounds like you're recovering well. Those darned chest tubes are a hassle!  I one time had a problem wiith mine, but fortunately I had a big bandage on it so only my shirt got wet. No puddle. My surgery was exacltly 1 month before yours and I'm feeling pretty much back to normal and a little frustrated because I am still limited in what I can lift Let us know when you get your final pathology report.

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