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Anyone else have long term chronic pain from thoracotomy?

crabbyhermit
Posts: 1
Joined: Jan 2013

At 40 I was dx'd with NSC lung cancer, stage 1b. I had the full-blown surgery with my upper right lobe removed. That was in May of 2011. In March of 2012, another tumor was found behind my sternum. So I had another surgery. This one on the center of my chest. (They cut right down the middle, then both sides of my sternum.) Luckily,the tumor turned out to be benign.

Anyways, I've had issues with pain since the first surgery. It doesn't seem to be getting better at all. I take gabapentin, morphine, and oxycodone every day. I did physical therapy for about a year. 

Has anyone else had pain last this long?

Thanks!

Heather

katenorwood
Posts: 1801
Joined: May 2012

Heather,

Hello !  I'm out only 3 weeks from my surgery....and the pain is one that is hard to describe to others.  I had H/N cancer and they thought I had mets to the right lung....but it came back negative.  Your surgery sounds way more indepth.  But I do have experience with nerve damage in the H/N area, and it sounds like this is maybe what's going on with you.  Gabapentien didn't do anything for me....PT helped some...but I have learned to go with the pain on my bad days.  I have been working with my primary, and use the oxy in unision with advil and flexeril on these days.  Continue to tell them how much pain your in.....and make them come up with a pain management program that will work for you.  I'm one year out from my radical neck resection due to adenoid cystic carcinoma.     Best of luck to you !   Katie

dennycee
Posts: 641
Joined: Mar 2011

My back issues came about as a result of VATS and the deterioration of three of my vertebrae.  The vertebrae were repaired by kyphoplasty but other pain persisted.  One day I called my doc to see if I could increase my Fentanyl and Flexaril dosages.  I was told to take two 200 mg ibuprofen twice a day.  Within 20 minutes the pain went away.  So now when my back spasms are bad I take a Flexaril with the ibuprofen.  

So this is a round about way of saying that Kate is giving you excellent advice.  Sometimes, especially with cancer, we develop a mind set that every ache or pain is going to need some major pharmaceutical intervention when some of the simpler solutions work best.    Please let us know if this helps.  

macromities
Posts: 2
Joined: Dec 2012

Hi Heather, I had my upper left lobe removed almost ten years ago. Sorry to say but the pain is still here, I've learned to live with it now just taking oxycodone on the bad days. I would say the pain has diminished a little through the years but has never left no matter how many different pain reliefs I've tried.

TriciaB13's picture
TriciaB13
Posts: 7
Joined: Jan 2013

Hi Heather,

I am 27 and in March 2012, I was diagnosed with Carcinoid Cancer. It is a rare cancer typically in people 65 and older. It is a hormone based tumor either found in the lung or GI tract. I was fortunate enough to go the The Mayo clinic and after being married for only 2 weeks, on May 29 I had a Total right open thoracotomy. Thye removed the 6mm mass frmm my right mainstem brochus. I am now 8 months cancer free and in my second round of PT. The pain is different everyday. I have just started going to a pain management doctor as my physican wasnt really helping. I am on neurontin right now and finding that it too is not effective. I also have thoracic deficits and my diapragm is still restriced on the right side becuase my lung is now considerably shorter on the right than on the left. I have heard form many people that Post Thoracotomy Sydrome which I have been diagnosed with is chronic. Yes, having chronic pain sucks! but when I consider the alternative I  can live with it. Never stop telling the doctors about your pain. I hope you find a combination that works for you. I am still in pursuit of mine. But clearly we are not alone in this fight.

Stay strong!

Tricia

cookemi
Posts: 8
Joined: Dec 2012

Hi Tricia, 

Thanks so much for sharing your story...I am 24 and was recently diagnosed with Carcinoid Cancer too. What a shock - especially at our age! I am having a thoracotomy procedure this Friday to remove a tennis ball sized tumor from my right lung. My surgeon plans to remove my entire lower lobe. I appreciate your insight into the healing process and would love any suggestions you may have for an "easier" recovery. I know this is going to be a long-term thing. 

Emily

JaniceL
Posts: 1
Joined: Feb 2013

Let us know how you do! Good luck!

 

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