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Thoracic surgrey with lung cancer?

terry1215
Posts: 3
Joined: Mar 2008

I am trying to find someone who had the same surgery as i did. I was diagnosed in April 2007 with lung cancer. They found a tumor in the back chest wall 11 cm it was so big they said it was innoperable. I began chemo and radiation so that the tumor would shrink and releive the pain. Apparently the tumor was pressing on my chest wall and causing alot of pain. After a few treatments of radiation and chemo i noticed the pain was going away. I could tell it was shrinking. I had a pet scan done and they informed me the only place they saw cancer was in the actual tumor. They did a biopsy and the cancer was confined to the one area of the tumor. They said for some reason the center of the tumor looked dead. Well after 30 treatments of radiation the surgeon who told me it could not be removed changed his mind. It had shrunk more than half the size. So on Aug 23 2007 I had the tumor removed. In order to get to it they had to cut threw muscle and nerves and remove the top lobe of my lung. Because it was so big it was stuck to the rib so they removed 3 of my ribs and reconstructed my chest wall front and back with a material called Gore-tex. I am happy because i am cancer free but i am slowly recovering from the rib removal. The pain is horrible and i feel like a armour suit is under my skin. I have to take pain medication because if i do not i can't function properly and the skin feels like someone is rubbing sand paper all over my top turso. The burning feeling on my skin is nerve damage which i am told they don't know if it will ever go away. As for the ribs i am told it takes time, maybe 2 years to even feel close to normal again. I am lucky to be alive but i just want to know if there is anyone out there that also had ribs removed and reconstructed and how long recovery is and if i will ever feel normal again. I would quess its like a prostesis only under the skin. If you are a cancer survivor that had the same type of surgrey i would like to hear from you. I have been blessed with a new chance at life and i am trying my best to live it to the fullest but the pain sometimes gets the best of me. thanks for listening.

cabbott
Posts: 1048
Joined: Aug 2006

I went to a support group a few months ago and met a man who had had a surgery like yours. He had a 10 inch scar (didn't show it to me but I took his word for it) and a rib or two removed so they could take out his lung and the cancer. He also was told that it would take two years more or less to feel normal again. He said that he was very depressed during that time and that his wife had a time getting along with him. She was at the group meeting. The great thing is that both he and his marriage survived. He was a 7 year survivor and doing fine. He could walk 2 miles a day, he looked fit, and he said things were better emotionally and physically. Finding a support group for all the emotional trash that comes with cancer really helped him. Taking walks (starting with very short ones) also helped. Pain meds helped. He mentioned having to take some special medicine to settle his nerves down and he was on it for about a year. Nerves are designed to fire when stimulated. When they are cut during surgery, they often misfire. It takes time to retrain them. When I first had surgery (a mastectomy for breast cancer, don't ask), I read about phantom pain. It is a common problem after surgery. People that lose legs still get itchy feet. Folks that lose arms feel pinched fingers. Well, folks with chest surgery still get weird feelings too. I found that light massage (not allowed until my stitches healed mind you!) would make the nerves fire all at once and make the tickly pricklies disappear for an hour or two. Eventually, the nerves started behaving themselves for longer. The lung surgeries for me (a VATS and modified VATS two weeks apart, again, don't ask!) cut nerves to run muscles in my abdomin and causes a lot of numb areas. Sometimes I feel like the muscles on my right side are pinches. Stretching, massage, and lots of yoga stretches are helping. I actually managed two situps once last year! That might not seem like much and maybe it's not, but it was a great day for me. The trainers at the gym tell me that other muscles will eventually take over, so I keep at it. I can easily walk 3 miles now and I'm getting better at the gym. So keep working with your doctor to find a medical regime that keeps pain under control, a support network that keeps your head straight, and an exercise program that keeps you going. Good luck!

terry1215
Posts: 3
Joined: Mar 2008

thanks for replying, i too have a large scar but i would say its bigger than 10 inches, closer to a foot or more. Where do i find support groups for lung cancer survivors? There is alot for breast cancer but not for lung. I live in Philadelphia and still am being tested every few months so maybe there is a grp at the hospital. As for walking, as i told you i take pain medication but if i go shopping and am standing too long i get pain in the leg and foot on the same side i had the surgery. I can be standing in line at the store and my foot goes to sleep on me. Even if i am walking it gets buzzy and numb. My torso is also numb, i don't think i mentioned that. I was told by doctor they are unsure if it will ever be normal again. My right hand and arm are also 50 % weaker than my left. I have always been right handed but i know now my left is the stronger side. I too am afraid of getting addicted to the medication. I tried to stop it but the pain was to much and the burning feeling from the nerve damage was like my body was on fire. I could not function at all. I did stop for 2 weeks and i was so sick from withdraw. Even though i am in pain maintenance and i follow doctors orders to the tee. I also made them lower the dosage but when i stopped it altogether i was deathly ill. In about 5 days i got over the sickness but the pain was so bad and i had a hard time breathing properly. I started taking it again. Now the pain is gone and i can live a near normal life. I just hope my doctors are right and i will feel better in maybe 2 years. I will tell you it was a relief when i received replys because i was beginning to feel all alone. No matter how i try to explain what i feel no one understands the type of pain. I hope someone out there replys that had 3 ribs out so i can relate to them. Thanks Again

Greggriggs's picture
Greggriggs
Posts: 132
Joined: Dec 2006

Terry I know how you feel.
I have some problems with Side affects from the surgery an the chemo. And Feel kinda alone also .
Your doctors can't give you a answer an there are none in the books because we are all differant .Just keep takin the meds better to feel normal an out of pain one day you will be able to cut back .They say two years an things get better I can tell you honest I am still waiting. Hope I can beat all the side affects from the chemo . You did not mention the chemo or the rads they had to be hard on you an that make it harder to get better.You are not alone Terry hope you can find answers an feel better
Greg

terry1215
Posts: 3
Joined: Mar 2008

Greg, thanks for the support.. Chemo was very hard for me, going bald and losing my long black hair really got to me. My Chemo was combined with radiation so for almost 2 months straight i was at the hospital every day. The chemo made me very ill and the radiation bought on so much fatique. I quess it takes along time to get over it but i thank god everyday for keeping me alive. Believe it or not what i dwell on the most is the surgery and how the epidoral fell out right after surgery and no one knew it. I screamed in pain but no one believed me because i had a button to push. Little did they know that the needle fell out of my spine and i was without pain meds for over 18 hours. I had 8 children and have never felt the pain i felt with the ribs removed. Unbearable!! I was in pain a year before they even diagnoised me as having lung cancer. Its been a horrible two years for me but finally everyday i feel a little bit better. I do look at myself as deformed now because i have such an indent from the scar and what ever they glued in me to hold me up is pushing my skin up too so i have alot of indents and gullys on my underarm and back. I try to do exercises to strengthen my arm like pulling the handle on a slot machine at Atlantic City. HEHAHE. Only kidding! i need a good laugh to stay sane. I did have therapy at home and outpatient but now thats done. Tell me do you have to get cat scans every few months? Did you lose alot of weight on chemo because i did but now i put it all back on. I hated chemo because you could not taste food and everything smelled weird to me. I ate nothing but oatmeal and rice pudding. The worse was your skin gets like leather so rough and you don't even want to get out of bed to bath. My treatments were long somedays they hooked me up 8am and i wouldn't get done until 7pm, the other days were 4 hour ordeals. I had my chemo 6 days in a row then a week off then 6 days again and so on. I would wheel the bags of chemo into the radiation room because i got that for 30 straight days. I didn't have time to get scared everything happen so fast.I don't know if i would ever go thru that again. You will not believe this but my only sister had breast cancer and finished her last radiation treatment two days before i was diagnoised. Also she had her surgery Aug. 23rd 2006 and I had my Aug 23rd 2007. Isn't that strange. Whats even stranger is she just got a new job and she is working at the hospital (Fox Chase Cancer Center) where i had all my treatments and surgery. She applied when she was taking me to radiation. Well enough about me thanks for listening and have a good day.

Greggriggs's picture
Greggriggs
Posts: 132
Joined: Dec 2006

Terry I can relate to your pain hope it gets better soon. I had my left lung removed in May 2006. I was luckier than you I did not have any Ribs removed .
But it feels like they broke all of them !! My back still feels like I am sitting on a coat hanger an it radiates around the side an over to the middle of my sternum. I can touch it now but for a year an a half I could not stand to have any thing touch it I had a hard time takeing my shirt off it was so sensitive. It is geting better it will be two years in May I dont know if the nerves will ever be normal agin . I did not want to become addicted to pain meds so I used to not take them . But my oncoligist told me don't let the pain get to you take them like they are prescribed . It is geting better but every nite I go to bed an think maybe tomorrow . Guess you an I will just have ta say we are lucky to be here .And it is getting better just not fast enough for me I want it now... bless ya Terry an Keep up the fight
Greg

ToadyFrog25
Posts: 2
Joined: Feb 2007

Hi terry1215! I have had the same surgery you seem to have had. I was diagnosed with NSCLC in May, 2005. Had surgery in June, 2005 to remove top half of left lobe and removed 3 ribs in my back (C-2, 3 & 4) I think. Yes, it is very uncomforable. I feel like there is something hard and stiff in the upper part of my chest all the time and can't move my left arm up very high. Can't lift things that weigh much at all, left arm feels strange from the upper part of my arm into the shoulder area. My chest is numb from between my breast around to where the incision is in my back which is past the shoulder blade and from the top of my breast to under my big rib in the front. Really feels strange, even after almost 3 yrs. Sometimes it really bothers me worse than others. Dr. says I have an awful amount of scar tissue in there. Asked me what I took for it. Told him I just deal with it until it gets unbearable and then I'll ask for pain meds. I have a high pain tolerance. Also feel like there is a band around me sometimes that runs around my side and under my breast. Really feels tight sometimes. Guess that scar tissue. Dr. said they had to almost turn my left shoulder inside out to get to the tumor and remove it. Have about an 18 in scar from the top of shoulder blade down and around under my arm right where my bra runs. Finding a bra that I can tolerate is really a problem (LOL). Yes, I can't stand for anyone to touch a certain area in my back and that always seems to be where someone wants to pat when they hug your neck (LOL). I just start shrinking when that happens. Sometimes I grab hands before they can pat me! Also, the muscles and nerves they cut can give you a fit too. Sometimes it feels like electric shock and horrible stinging. The muscles seem to want to swell and feel really tight. I have found the weather has an effect on it too. Moisture seems to make it tighter. I hadn't thought of the words you used to explain the way it feels ( an armor suit under the skin) but you kinda described it right. It's been almost 3 yrs. since my surgery and the feeling hasn't come back so I guess it never will. Dr. said probably not. But, I just thank God I'm alive and can be with my family and can get out of bed every morning and walk on my own two feet. I still have one full lung and a small piece of another one. I get short of breath easy and when I do I just stop and get relaxed and keep on going. After chemo and radiation, I'll never be the same. I don't have the stamina I did before and never will. But, I'm still glad to be alive!!!! I don't get on this website often but I will keep checking to see if you have read this. Good luck with everything. Keep your chin up and do the best you can and say a prayer.

skanji
Posts: 1
Joined: Aug 2015

Hi Terry1215,

thank you so much for sharing your situation. I am in somewhat a similar situation. Am battling sarcoma in the back and somewhat spread through the ribs. Am going though chemo at the moment and looks like they may be lining me up for similar surfeet as yours. I pray this note reached you in good health. 

I wanted to seek your thoughts now since it has been a while since you went through the surgery. How have you managed the pain and healing of your skin and rib cage.

 

best regards.

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