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New Lung Cancer Survivor

Charlie Butler's picture
Charlie Butler
Posts: 12
Joined: Feb 2011

My name is Charlie and I am 55 years old. I became a New lung cancer survivor on Dec 6, 2010. I was dx with Adenocarcinoma and had a lobectomy of my right upper lobe. My cancer was localized within the lobe and no spread to the lymph nodes. I have had read that the cancer can spread through the lymph system and by the blood stream. I am trying to get correct information on the possibility of dist met even though there was none found in the lymph nodes.

Cancer makes you a different person and reading your posts makes me aware that there is someone out there that knows what I am going through. Thanks!

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

Well we have some things in common. Same dx same type same age. Location different, I was lower right lobe. I asked the same question you did. Surgeon's answer was well there was nothing in the lymph node. My GP said instruments are not so sensitive that maybe 1 cell didn't get through the lymph system. But I like to think the surgeon is correct. I also believe that if just a few small cells got through maybe my body will be able to fight it off if I take care of my health and stay fit. I am a 2 1/2 year survivor. Everything has been good so far. Best of luck

joep531857's picture
joep531857
Posts: 32
Joined: Feb 2011

i prefer to listen to the surgeon. I see my oncologist tomorrow afternoon. I hope he is as positive. I feel quiet good about the outcome. But I am an eternal optimist. I will let you know. Thanks for the update

cabbott
Posts: 1046
Joined: Aug 2006

Cancer is one scary diagnosis, but localized cancer with no spread to the lymph nodes sounds good to me. I had a PET/CAT scan when I was first diagnosed with lung cancer, just before surgery. That let the surgeon know if there were any distant mets. Fortunately I was also lucky. That was back in 2006. If you also had a PET scan or PET/CAT scan it will give the doctors a good idea of whether there are any distant mets. Your reports belong to you. It is a good idea to get a three ring binder and ask for your reports (all path reports, surgery reports, blood tests, radiology reports...) and stick them in order by date so that you have them. Yes, doctors can order copies, but that takes lots of time that you can save if you have all the reports with you. It also helps you keep things straight. The medical lingo on some of them is daunting at first, but after awhile you can get to understand what they are saying. If you have any questions someone on this board or somewhere else on the internet can provide a translation. Even if you don't want to read them, it will help your primary doctor know what is going on when you go in for a checkup.

Charlie Butler's picture
Charlie Butler
Posts: 12
Joined: Feb 2011

Thanks for your reply! I almost don't feel I should be here. There are so many here that are a 1000 times worse than my situation! It is just as you say though, Cancer is a "Scary Diagnosis" and I find myself so soon after my dx, thinking about it all the time. Every ache and pain starts you thinking..........

I am very thankful to have found this family! There are definitely some horror stories out on the internet. The only people that you can dsicuss "Cancer with are those that have it or those caregivers that have dealt with it. I am now trying to go on living but I feel that I will need this support until my toes curl up and I hope I can give support to others.

lekkerone
Posts: 199
Joined: Jan 2011

Hi Charlie it's nice to meet you. Our stories are almost identical except my cancer was confined to my left lower lobe which was removed. I had my surgery on Dec. 1 and am pleased with how I feel but of course I have nothing to compare my progress with. I get my exercise on the treadmill. Diane

Charlie Butler's picture
Charlie Butler
Posts: 12
Joined: Feb 2011

It goes without saying that I wish that we had met under other circumstance........
My surgery was an old fashioned lobectomy no VATS, so I only know about what I had done. All in all I feel that I am progressing well. I still have have some shortness of breath and I still have occasional pain spasms. My chest area is completely numb and I don't know how long that will last.

I will have my first follow-up CT scan in March and based on all that I was told there seems to be little risk for recurrence. "Famous Last Words". I will probably be all consumed with this until I get a year or so out. Have a great day!

ddevil41
Posts: 11
Joined: Oct 2009

hi Charlie, I was dx in june 2009 with nsclc squamous cell carcinoma. had lobectomy of lower left lobe. no mets to lymph nodes. then in august 2010 due to weight loss and general poor feeling called cancer treatment centers of america in chicago. Spent a week there getting mri, bone, and pet scans. All clear, No evidence of disease. Great so happy beat it!! but oncologist did,nt like the look of one lymph node. Thought it looked a little large. so had node removed, all clear. surgeon did broncos copy on upper lobe of left lung. where he found a tumor growing through staple line of broncos tube where lower lobe had been removed. Said I was very lucky cause this had not shown on pet scan. So had upper left lobectomy in september 2010.now 6 months later have major pain in left ribcage and arm. going to get new scans on the 18th. anybody have this happen to them ? really dont want bone cancer, any info on this would be greatly appreciated, Thanks , Garycrews62@gmail.com

LuvMom_1
Posts: 3
Joined: Feb 2011

my mom is going the same thing. I will pray for you and any and everybody that has to deal with this. Could I ask you, are you in pain all the time?

joep531857's picture
joep531857
Posts: 32
Joined: Feb 2011

Hi Charlie,
My name is Joe and I am 53 yrs old. I was diagnosed in dec 10 also. I had a vats left upper lobectomy on Jan 18th. I am now all healed up but i understand everything that you mentioned. I am stage 1b because even though my lymph nodes were negative it had touched my pleural sack. I am now in the 3rd week of agressive chemo just to make sure it will not spread. My pet scan showed no mets anywhere. My surgeon, oncologist and primary care doctor sat down with 12 other physicians and discussed my case and they felt this was the way to go. My 5 yr survival rate is said to be 80%. Still i am scared and worry about every thing. I am forever grateful to this website and folks like you who really feel the same way.
Sincerly,
Joe

PattiM
Posts: 6
Joined: Mar 2011

Hi Charlie ... I was also dx in 12/10 and had a VATS lobectomy (lower left) on 1/25/11. I am a 55 year old female, stage 1a. I know what you mean about cancer making you a different person. I am very very grateful that my cancer was caught early, but still feel frustrated and scared that it will return. I wonder if that feeling will ever go away?
8 weeks after the surgery, I still feel like someone beat my upper torso with a baseball bat! I don't think people understand the frustration and discomfort that one goes through unless they have been there, which is why this discusson board is so great. I thought it would be a quicker recovery, but I am learning to cope one day at a time.
God bless everyone here!

ddevil41
Posts: 11
Joined: Oct 2009

hi pattie took me about 6 months to really feel pretty much back to normal. but due to second surgery I have lots of scare tissue that will always be painful. wish everyone the best recovery possible, any questions feel free to email me at Garycrews62@gmail.com

PattiM
Posts: 6
Joined: Mar 2011

Thanks ddevil41!

grama17's picture
grama17
Posts: 14
Joined: Mar 2011

I agree about finding this venue of being able to share stories with people that understand some of the same aspects of the DX of cancer, and then surgery and treatment. There are so many things that go on with the whole thing, and it is comforting sometimes to be able to ask questions or share experiences with others who may relate more than others.
I had upper left lobe removed on 2-28-11 and was told this would be a longer recovery process than when I had a triple bypass in 98 or a breast cancer lumpectomy with a breast augmentation followed up with radiation last year. I know being older (63) is going to slow down the process of recovery, but it is still a bit irratating to not feel much better each day I get up. I was really lucky that this cancer was a prime and not from the breast cancer. It had not spread so I am now cancer free. I do feel really fortunate not having to have aditional treatment from this.
Some of the pain from this surgery is so much like when I had my heart issues that it is hard for me to tell if it is from this surgery and recovery or not. I don't know if it is normal to have my upper back burn and hurt alot most of the time. not sure if my chest is supposed to feel like someone is sitting on me all of the time. Anyone have the same feelings? I see my surgeon next week and will ask him if I should be thinking about seeing cardiologist again. My surgeon had me go see cardio dr before surgery to make sure was ok and the tests came out alright.

Anyone having same issues? Well I am glad that it seems from the posts, most are doing pretty good since surgery. It is a battle for sure!
Thanks for listening and Prayers to all of you.

cb girl's picture
cb girl
Posts: 56
Joined: May 2010

My husband has had back pain from his RUL on Jan 24th-it was more mid back-about where the incision started- it has gotten better with time, more sore than burning. Of course today he had his LLL lobectomy so everything hurts right now ;-) His chest felt sore, pins and needles, in a stripe, if you will, beneath his nipple, but not a sitting on your chest feeling. he thought the pains were getting better-just in time for this next surgery. Seems that's how it goes sometimes. Hope you get to feeling better.

grama17's picture
grama17
Posts: 14
Joined: Mar 2011

I was wondering how your husbands surgery went on Friday. So glad to hear he is recovering. It is a pretty scary surgery, at least my surgery had me a bit worried this time. I was praying for your husband and hoping him the best. Amazing what they can do now to help people live better and longer.
With my back pain I am thinking is hopefully sore muscles that aren't being used much. I will be asking the surgeon on Wed, if he thinks is normal enough not to worry about it.
Wishing a fast recovery for your husband.
Thank you for your response.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

After my lobectomy I had lots of weird pain in back, ribs, and underarm. I had surgery in May and I still have pain at certain times as well as some numbness. I had a tight chest for a long time too. I also had a cough that lasted about 3 months after the surgery. My Onc said all these things are normal and part of the healing process. I had chemo after my surgery and have had sore joints ever since. I have lower back pain that I did not have before the chemo and a scan revealed that I have arthritis in that area. I think the chemo may have aggravated it.

lekkerone
Posts: 199
Joined: Jan 2011

I had the lobectomy on Dec 1 and still have rib and nerve pain although not as often.
My surgeon said some have it as long as a year.

grama17's picture
grama17
Posts: 14
Joined: Mar 2011

It is so nice to get different info from patients that have had similar surgerys and at different stages. I have been trying different pillows and different chairs for using the computer and I think it is helping some. I am not able to stand and do dishes and bending over much like taking clothes out of dryer set me back to a higher pain level. I didn't notice in the last 2 days that I hve taken pain meds a bit farther apart and it hasn't caused too many problems. So I think I have to say this is a better week than the last. Baby steps I think. Thanks all

PattiM
Posts: 6
Joined: Mar 2011

Hi grama17 -- I also have back pain and aching in my ribs most of the time. My midriff area alternates between numb and pain, but the aching is there all the time. Sometimes I feel like there is a volleyball inside my chest pushing everything against the sides. Bending over is the worst, isn't it? I tend to drop things a lot (just my clumsy nature ... lol) so I sometimes bend over way more than I'd like.
I'm still trying to find a comfortable sleep position ... let me know if you have any suggestions.
Hang in there everyone! We are heading in the right direction!

cb girl's picture
cb girl
Posts: 56
Joined: May 2010

Well my husband always has liked an adventure so we are having one in the hospital. The surgery while complicated-graft for the pulmonary artery, stitching windpipe ends together, they deemed it a success with negative margins. BUT his breathing tx caused lots of really hard coughing which then caused a leak to form in the lung. YIKES! They were afraid they might have to take him back to the OR which would be really risky, but the leak seems to slowly be resolving itself. He's not on oxygen- he usually uses it after we've been for a stroll around the nurses station a couple of times and takes his "friend" oxycodone every 4-5 hours. His pain seems manageable and is being very controlled. We are just waiting for that hole to seal up and watching it pour down rain here in Tampa, FL. It will all be worth it if we get the cure, though I know it's a long, sore recovery. Thanks for thinking of us. Tomorrow will be one year since we received the dx. April Fools Day, how fitting ;-)
Tracy

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Hello Charlie and others...I am jealous !!!.....count yourself as fortunate....I wish I could have surgery, but my tumor is wrapped around my right lung main artery, so they would have to take the whole lung..this would be fine if my left lung could support me...but it will not....so I continue to live with the cancer (albeit reduced in size!)...My lymphs cleared up after chemo and rads. Coming up one one year survivorship and expect to be around for a good while !!

Good wishes to you...

Dave...47 yr old, IIIB nsclc adenocarcinoma

Superlung
Posts: 5
Joined: Apr 2011

Hi Patti & Charlie,

I had my left lung removed on 2/24 and still feel pretty beaten up too. My caregivers see me as normal and I find it really hard to explain the pain. I've recently joined these discussion groups as well as the chat room. It helps me to feel like many someones know what I'm going through.

One day at a time. Keep breathing strong friends!

De

bunnybear
Posts: 2
Joined: Mar 2011

hi charlie my name is Donna i am 43 was also told i had adenocarcinoma with unkown orgin they came back and after weeks of testing now say it is nonsmall cell lung cancer stage 4 that is inoperabel incurable the only syptom is the lump on my neck. finding this site has really helped me i finished my 1st chemo treatment last week and 2nd round of trial drug today this is the 1st time i have posted anything. i have a wonderful group of family and friends but talking to those that have gone through or are going through does seem to give me more strength thank you all good luck charlie hope all goes well for you

bunnybear
Posts: 2
Joined: Mar 2011

hi charlie my name is Donna i am 43 was also told i had adenocarcinoma with unkown orgin they came back and after weeks of testing now say it is nonsmall cell lung cancer stage 4 that is inoperabel incurable the only syptom is the lump on my neck. finding this site has really helped me i finished my 1st chemo treatment last week and 2nd round of trial drug today this is the 1st time i have posted anything. i have a wonderful group of family and friends but talking to those that have gone through or are going through does seem to give me more strength thank you all good luck charlie hope all goes well for you

akakimber
Posts: 1
Joined: Jan 2012

Prayers and thoughts go to you'r familiy!!

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