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Pain & appetite after lung removal

jalexander
Posts: 31
Joined: Nov 2003

I'm 42, stage 3b, had right lung removed 01/15/03. Looks like 90 percent chance of cure! I am so thankful since I have young kids. Anyone out there with info about the pain after surgery. It's been 10 months and I still have pain that feels like it's muscular or bone related within the chest cavity. The doctors tell me it's nerve endings along the ribs since they had to pry them apart during surgery. I can live with it, no problem, just wondered if anyone else had similar pain. Also, I can't seem to eat as much as I did before surgery. That's probably a good thing since I'm a little overweight (5'11" 210 lbs), but I just wondered if anyone else out there felt the same way? Thanks.

bobmc's picture
bobmc
Posts: 47
Joined: Nov 2002

Hello Jalexander;

I'm a bit over 2 and 1/2 years post op and it's the same for me. The pain is actually a bit worse now than after the first year and seems to be more bone or nerve than muscle. It's also more to the back and shoulders. My left lung was removed and the pain in that area is'nt too bad(seems to be more from overuse), the more troublesome is more in the right center of the back along the spine. I'm having a bone scan done this Fri. to rule out met's. I really think that things are just shifting a bit and my good lung is enlarging to compensate. I'm told this is what happins and it does makes sense. I also take celebrex for arthritus which works well. You may want to ask your doc. about it. I know quite a few others that have had surgery and many take it or vioxx for this pain.
My appitite like yours has also changed. I eat smaller meals and must eat slower. I have no idea why but many of us have that in common. Also, you forgot about the excessive gas and ability to belch like a beer drinking truck driver. No offense to anyone, but this is also pretty common.
hope this helps and my best to ya, you can PM me here on ACS or reach me at lungcancersurvivors.org( boards) if ya need to.
God bless and be well
Bobmc- NSCLC- stageIIB, left pneumonectomy 5/2/01; " absolutely insist on enjoying life today!"

jalexander
Posts: 31
Joined: Nov 2003

I saw in one of your later postings that they have found two brain tumors. My prayers are with you. Are they operable? How did your bone scan turn out? Thanks.

BigRichFish's picture
BigRichFish
Posts: 2
Joined: Dec 2014

Has the pain from the lung removal, gone away? I am going on 18 months since they removed my right lung, and the pain is still here, terrible, thank you, Rich

EllenG
Posts: 2
Joined: Dec 2003

I had my lung and lung lining removed 5 years ago and after 2 years of being in so much pain, I was diagnosed with permanent nerve damage. I'm on daily regime of neurotin. I was stage 3b too, it has since metastasized to the liver (4 times).
I continue on chemo.
Wishing you continued health.

eab
Posts: 2
Joined: Nov 2003

I am 43 and had my lobectomy (lower left lobe)5 wks ago. I had a terrible post-op w/ nausea and vomiting, consistent dry cough, and all kinds of GI problems. What I am experiencing now is cough, acid reflux, and sometimes diarhia. All of which are better than before but, I too am curious when it will go away. I did not have these problems prior to surgery. As fas as the pain, well I still have them in different locations, but that has gotten better too. I am curious too if any of it will completely go away. The pain that I mostly experience occur when I cough. Also,I occasionally get this shooting pain in the middle of my spine. I also have occasional tightning on my upper left chest and below the left breast. I supposed I haven't been too worried about it because it is better that 5 weeks ago, but I would be concerned if it continues.

pacisan's picture
pacisan
Posts: 19
Joined: Jan 2002

Hi...I had my left lung removed in June of 2001. I still have pain over the entire left side. I find relief with massage and a hot tub..but nothing is permanent. I also have steroidal epidurals, they are supposedly for my neck (digenerative joint disease), but they also help my back.I don't belive that you can have surgery over an area as massive as it is when they remove a lung and not have some kind of permanent damage to nerves, muscle and tissue. Do what you can to relieve the symptoms, but don't let it prevent you from being a survivor...you can beat the pain..keep in touch..let me know how the tests go..I'll be thinking of you..Sandra

KSGRL66's picture
KSGRL66
Posts: 5
Joined: Apr 2011

Sandra,

 

Thank you for posting this. I have been dealing with this pain for so long and was starting to get really depressed. I see now there are others having the same problem.

 

Tammy

 

BigRichFish's picture
BigRichFish
Posts: 2
Joined: Dec 2014

Hello, my total right lung was removed on April of 2013. I have been dealing with constant pain. Sitting too long, or driving too long is the worst. When I walk, it's not as bad. I had special firm pillows made for me. I use them when sitting or driving. They keep a slight pressure on my ribs, where they went in. They give me pain relievers, but I'd rather not take them, unless I am really hurting bad, and have things to do. Also, they make me feel like the couch is my best friend, I don't like that. Do you have any info on getting relief, what do you do, thank you for any help you can give, respectfully, Rich Mullen

casinotomm
Posts: 6
Joined: Jan 2004

I was diagnosed with large cell carcinoma cancer in july of 2000 when i had an accident at sixflags over kentucky theme park when i hit my chest on the saftey bar and went to the hospital for the pain and they saw a tumer as big as an orange in my left lung.So they took half of my left lung and said a little got into my chest so i had lots of rad and chemo.The dr told me the same as my chest and side would be numb or hurt for awhile and yes it still hurts today almost 3 yrs later .I dont think it will ever stop hurting not to mention I now have a hard time breathing and am now on disabilty because of it.I have a 3 yr old born just before my surgery and he is hard to chase in my condition.Well my side hurts alot to answer your question so I hope yours gets better as I to am 43 yrs old.

sivy
Posts: 1
Joined: Jan 2004

Last April I had a thoracotomy which showed no cancer initially. After contracting a DVT from the surgery I was hospitalized and informed that the later biopsy did show non-small-cell bronchioalveolar cancer. I've never smoked. The only treatment was more surgery to remove the right lobe. I've recovered from the surgery and feel very lucky not to have had chemotherapy or radiation. But I do have a residual pain across my diaphragm. It gets worse after activity or lifting, but it never disappears. It's an uncomfortably claustrophobic feeling like having a rubber band around my midriff all the time. Has anyone else experienced similar discomfort? Thank you.

Alloyd
Posts: 9
Joined: Jan 2004

I have a lot of back & rib pain. 16 months ago I had my left lung removed stage 3a. I now have a slight curve to my spine from the lung gone. I also have nerve problems from radiation to my spine my Dr. says. Still it's great to be alive.

KSGRL66's picture
KSGRL66
Posts: 5
Joined: Apr 2011

I have also been having pain in my side since they removed my right lung. Sometimes when I lean to the right I have this feeling like something is being twisted and I can stand up. I have to lay down and rub it out. My doctor did an MRI and said they didn't see anything abnormal. He did put me on Flexirill to help relax the muscle and I have also tried rubbing the area and heating pad. When I eat to much it hurts even worse. 

Hilajoan's picture
Hilajoan
Posts: 21
Joined: Nov 2011

Looking for stuff about arm pain brought me here, but am on the MMMT/uterine group, too.  Had upper left lobectomary 7 weeks ago, and now my diaphragm is raised right up under the remaining piece of lung (the lower lobe - which is now in the upper part of my chest) , and so is my stomach.  Of course I have pain, but keep it under control, more or less, with Paracetamol and the occasional Tramadol.  But I am SO breathless - I don't see that mentioned much - and I have trouble eating much at a time, and also have lots of 'wind' - will it improve, does anyone think?   and new aches in my left arm - I imagine it's nerve pain?  I have also more or less lost my voice, and have to see speech therapists to try and remedy it - left vocal cord is paralysed, apparently a fairly frequent result of this surgery - but I wasn't warned in advance, nor about the peculiar positioning of my diaphraphm and stomach.  As for fatigue, I find I cry if I overdo it - and currently overdoing it means spending a whole morning out and about, seeing medics, or whatever.........  I am normally stalwart - do others feel like me?   I also feel that anyway my cancer will recur AGAIN, it's always come back after 10 months or so, and it seems a bit futile keeping on cutting it out and poisoning it and burning it, just to get a few months off - though of course - I have had five years that maybe I wouldn't have had without the first treatments........   Sorry to drone on.  Joan (from London, UK).

Trishbvi
Posts: 1
Joined: Jul 2017

I had my right lower lobe removed 6/21 after having tumor  removed and found to be 1b Adenocarcinoma 

So many things I did not exist after this surgery.  Specifically the biggest thing for me is having to be on constant 02.  I was told I had good pulmonary function, so completely unexpected to wake to this.  It off course complicated all other healing.  Hard to exercise when you can't catch your breath.   I also have been experiencing strange gastrointestinal issues....phantom pains that feel like indigestion or gas,  nausea every time I eat.  I've lost 20 lbs so far.  The last two days I am just so wiped out and cannot get comfortable with the gastrointestinal stuff.  I'm losing heart by the moment....I just thought I would fight the cancer and get back on my feet.  I am 55 and was healthy with no preexisting conditions.  No idea what to do about my livelihood.  Anyway, commiserating with you.

twizzle
Posts: 1
Joined: Dec 2017

I had my left lung removed 5 weeks ago and it is also the gastro problems that are holding me back. The in my back and front ribs improves day by day but I have lost 13 lbs in just two weeks. Really bad gas from both ends with horrible stomach pains and bloating. I also was not warned about this before the operatation. I still have a little chemo to look forward to and now am dreading it after reading about the gastro side effects.

Saidf
Posts: 1
Joined: Jun 2017

had right pneumonectomy in may this year.  Having pain in chest, high blood pressure, and terrible cough.  Can anyone advise of their experience?

jorola's picture
jorola
Posts: 126
Joined: Mar 2016

They are only real ones who can properly advise you as to what is going on here. You should should see them.

Nstigger's picture
Nstigger
Posts: 2
Joined: May 2017

Hello, 

In the past three months I have had two lung surgeries. The first to remove what we thought was just a 2.9 cm nodule which ended up being a 3.5 gelatinous mass called Colloid (Musicious) Adenocarcinoma very rare stage 1B. In between my surgeries I was scanned away every inch of my body and it all came up clear. The last step in this treatment was to remove the lower left lobe which was done 2 weeks ago. My questios is does anyone else have this type of Cancer? Who would want to know about this? What do I do next? So far no Chemo/Radiation. We are on watch with scans every 3 months. Do I get a second opinon? I am 35, I have a 3 year old son and as for all of us time is a precious jewel. Any advice would be greatly appreciated.

 

Thanks

z's picture
z
Posts: 1411
Joined: May 2009

Hello, I have not heard of this either.  Please post this on the Inspire Health web site.  Lots of posters there and they post a lot.  I had my lower right lobe removed via the vats surgery on 9-23-10 and so far so good.  Stage 1A NOMO, No chemo/radiation and just yearly scans.  Mine was squamous cell.   I wish you well.  Lori

Tmac69101
Posts: 7
Joined: Jul 2017

Hi Z, I read your post and wanted to reach out to you.  I have just been diagnosed with Squamous Cell.  It is in the clear area between my lung and sternum (3 cm tumor).  I also have two lymphnodes in my sternum that were cancerous.  This would found through CT imaging, Pet Scans and a biopsy.  So far, nothing else show metabolic activity.  I haven't been staged yet.  I am very scared.  For some reason, I have not exhibited any symptoms...no fatigue, bloody mucus or cold sweats.  In fact, I still play tennis 3 to 4 times a week, with no respiratory issues  My only symptom is the chest pain.  It is good to know that people have survived this horrible disease.  I just wanted to ask you your thoughts because you have been there.  Thanks.

Katmar's picture
Katmar
Posts: 22
Joined: Apr 2017

I have not heard of this cancer. However, being staged at 1b is very good. Keeping a watchful eye sounds correct. It can never hurt to get a second opinion when dealing with cancer and your body. And you may want to talk to someone knowledgeable about this particular cancer. Best wishes and, hopefully, the worst is behind you!!!

wiki123
Posts: 1
Joined: Jul 2017

Hi All,

i am new to this forum and my dad had his left lung removed on 29 May 2017 due to squamous cell lung cancer was daignosed in 22 Feb 2017. he is getting adjauvent chemo these days but since after his surgery he is having severe continuous pain in chest area from right center to back and shoulders and left arm as well. we are giving him Fentanyl patch and hydromorphine but nothing is working. is it severe pain all the time ? he has some swelling below collar bone as well which Surgeon think is due to internal scar or something but X rays and ultrasound is fine. Specialists and GP still dont know what is causing him so much pain. anyone can share their experience and what are the things can help ?

clw1976
Posts: 1
Joined: Oct 2017

Hi, 

I had my left lung removed 2 months ago. I have a lot of pain in my upper arms and shoulders. Has anyone else experienced this? I know I did a lot of lifting with my arms after surgery and expect some muscle pain. But this pain does not seem to be getting any better. 

I have read many messages and my stomach seems to be smaller also. Why is this, does anyone know?

Thank You,

CLW

 

Crnana2
Posts: 1
Joined: Nov 2017

Hi CLW.. I'm new here I also had lobectomy 5 weeks ago doing well except the severe numbness pain from mid chest under ribs under arm and back side..hoping will subside but not yet. I' on GABAPENTIN 3x day, tramadol if needed as break through. Also oxycotin if need. I just don' like taking narcotics and sleeping unless unbearable.

KattZR
Posts: 3
Joined: Nov 2017

please read my new thread - managing pain naturally after lobectomy. I hope it helps. 

ClaCla
Posts: 104
Joined: Jul 2017

Hi CLW, I don't know about anything about the pain.  I only had to have a lower left lobectomy, not a full lung removal, and didn't have any pain from it after about six weeks.  But I have found that appetite has gone up and down after surgery and then again with chemo and radiation.  Just this past week, I lost 7 pounds without trying.  I suspect my good fortune in regards to appetite should end before too long, since this is my last week of treatments.  Wishing you the best success.  God bless.

Hilajoan's picture
Hilajoan
Posts: 21
Joined: Nov 2011

CLW - I think I know what yours is:  you are breathing very shallowly, and the muscles of your shoulders and neck are doing the work that your diaphragm and lungs should be doing.  You need breathing exercises.  they tell me to do 'belly-breathing', relaxing my shoulders.  slower breaths, to reduce 'panic' feelings.  Can you get respiratory physio?  Or look up ACBT online.   BTW - I lost lots of weight after lobectomy, over a stone, and happily, it has not gone back on!  Wind, discomfort, cramps, raised paralysed left diaphragm, paralysed laryngeal nerve/left vocal cord, got it all.   Joan. 

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