Lung Cancer Support
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I’m new here

Hi,

I had a right middle Lobectomy 4 weeks ago biopsy showed pulmonary adenocarcinoma T2aN0M0 so no adjuvant chimo or radiation, but CT scans every 4 months. I feel really strange being in this nowhere-land and have so many questions like;

how long after vats lobectomy will I feel well? When should I go back to work?

I had great lung capacity before this surgery. What can be expected after? I am 63 yrs

I feel impatient, stressed, confused and alone as I can’t do anything but wait to see what happens next. I feel guilty because I get to be cancer free at least for now but not so many people have a that chance.

I guess this is normal as I have had the worst year in my life. I had 4 stents in my right coronary artery last december, then a nodule resection in the same lobe the 24th of april and now this lobectomy. I was a fully capable happy person before all of this.

Anyway thanks for listening. I hope time will help but it sure is taking it’s time.

Any suggestions are welcomed.

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I know how you feel. I am also 63 and was working 50 hours a week until my cancer got me. I had my right upper and middle lobe removed last september. I've had to learn to live with this new normal. Not been easy but I'm figuring it out. I had my second scan today following my surgery last september (2016). I get scan anxiety waiting for the results. I am happy that you don't have to do chemo or radiation at this point. Hoping your strength keeps getting better. My best to you.

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I had a LLL lobectomy via VATS last March. My lung capacity was very good before and it is pretty good now. I was pretty functional by two weeks, but my stamina was much slower on the rebound. I'm 70 so I guess I can blame age some for my new desire to take occasional naps.

I have to admit that I am still mentally adjusting to this new medical condition. I believe this forum helps. I have family support that helps also, but up until this year I was always supporting them. Guess I'll have to get use to it.

Share whatever you feel here. There are a lot of good folks to lean on.

Rick

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Metafran, seems to me that feeling miserable right now is pretty logical. It is terrible to feel like someone pulled the rug out from under you. You have had a long road and it has taken its toll, but you will regain strength and feel differently - it just takes time. Of course, from what these good people here tell me, it is a different type of strength and a new normal. But, I am guessing you already know that from your past experiences.

Please don't feel guilty, just feel blessed. Everyone is very happy for you.

Thank you for joining us and sharing some of your story. Please stick around:)

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Welcome Metafran. Those of us who have been fortunate to have a lobectomy have discovered a new normal depending on how much lung tissue was removed. In my case, I lost 2/3 of my left lung. My new normal has been increased shortness of breath on exertion, fatigue, and even some residual pain in the surgical and chest tube sites even after 2 1/2 years. I also am more sensitive to pollutants in the air. This is all manageable.

Let your body dictate to you, but do walk as much as possible and rest when you feel the need. Keep your pain under control and try to maintain good nutrition. Your recovery will be slow, but it will happen. Those scans are anxiety producing,, but necessary to know what is happening in your body.

I wish you a smooth recovery. Be kind to yourself.

Jean

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Hi Welcome Metafran! You will find this is a great group, and a great place to have your questions answered and let your hair down. I went to a conference last week, and there is a new device being used at Roswell Park Cancer Institute that is meant to increase lung capacity before surgery and strengthen it after by increasing resistance. Their number is 716 845 2300 and you would probably ask for the Thoracic Clinic.. You might want to contact them about getting one - it is very much like hospitals use for regular patients to help breathing increase, but designed for lung patients. There's a word - regular - none of us fits that category any more! Never feel guilty for being cancer=free - it is a gift that some of us have and some of us don't. For me, this is my 5th primary cancer, so I've been around that block a few times, and learned not to ask why me in either direction. I can't answer your questions about surgery - my first lung tumor was zapped with a mega dose of radiation and the others are waiting their turn, what ever that is. But I do know that you should be having an open dialogue with your oncologist about returning to work - and all the other normal things you can and want to do!

All you are feeling is normal for someone who has been through what you have. Don't stress about the feelings! A lot has happened in a short time, and you have to take the time to adjust to it. If you can, find a support group that deals with cancer - it would be nice if you could find one that deals with just lung cancer, but they are few and far between, so settle for one that is all different kinds of cancer. I belonged to a general support group and it was a great deal of help, even though we were battling all sorts of cancers.

Make use of all the resources you can find, and don't be afraid to shake the trees to get what you want and need. The American Cancer Society has an online support group, too.

Please keep us informed as you progress - we do care a lot about each other!

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I think the wait and see is so difficult. It was a month between my diagnosis and surgery. I was inwardly screaming, hurry up and get this done. I think my issues are about control. I feel you have none and have to wait for someone else. I too have also had stents for coronary issues. I had 2 stents, they suddenly closed, causing a heart attack, then 2 more stents. I think everyone recovers at a different pace. I'm sure you will feel stronger everyday. Good luck!

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Please do not feel guilty! Each time I read about someone’s lung cancer being caught early enough to have it surgically removed? I call that a victory. Each victory is another voice that demonstrates that early diagnosis IS key.

You’ve gotten some excellent advise here about healing and work and I can only add that it does take more than just a few weeks. You will always feel just a bit more fatigued than before because your lungs’ capacity has been cut by 20% or so. The heart will always have to work a bit harder.

I hope you’ll stick around and share your experience now with newer members joining. You are the expert on what you experienced and that is what so many need to hear.

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I am in the same boat as you. Cancer free at moment but no one to talk to about stress and nerves that come with dealing with cancer. I have tried every thing to quit smoking but it all makes me get anxious and mean. I do want to live but have high stress job and do not know if business will be open from week to week. I am old so will have hard time finding a new job. Good to find this place where we can help each other get thru this hard not knowing time in our lives. No one that has not gone thru this does not understand we are not looking for sympathy but how to handle this .

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Ckmartin,

I’m sure Peggy will be checking in to help you with resources available through Free to Breathe. In the meanwhile you might contact your hospital’s oncology social worker and ask about any Living With Cancer Support Groups available in your area. Also they may have special programs available to help with smoking cessation.

Please be gentle with yourself. You’ve a lot of stress. People make it tough enough with the stigma of tobacco use you don’t need to add any more burden. 86% of smokers never get lung cancer and there’s no way to be 100% certain what caused the cancer.

This link will connect you to Gilda’s Clubs and Cancer Support Communities across the US. There are also online support groups they run.

cancersupportcommunity.org/...

Because you are so right. No one who hasn’t gone through this understands we are looking for ways to handle it.

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ckmartin,

Thank you for reaching out to this community, good to have you with us. You are right, only those of you who have lived this understand it fully - it is such a difficult journey. If you would like some resources, please email me at pbezruki@freetobreathe.org or call me at 844.835.4325 (our toll free support line). We want to help.

(All of our resources and materials are free, including shipping)

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Please try Chantex I quit after 40 years...as for anxiety take a Valume🙄

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Hi Don,t give up keep fighting it will take awhile to get over the vats I have less room to breath and I get tired easy. So you should do better than me I have cope which does not help. You,'ll get your strength back. Good luck I,'ll be thinking of you. susiejo1948

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Hi I had my upper left lung lobectomy on 10/27 was in Columbia in NYC for 10 days there were complications during my surgery I had stage 2 adenocarcinoma and when surgean went in the cancer was wrapped around my windpipe so they did a tracheotomy..The healing process for me is taking forever it has been almost 7 weeks I am still in a lot of pain and cant breath if I walk or do anything..I have to see oncologist on 12/28 as they say I need a little chemo it was the worst operation I ever had I had my 2nd heart attack 1/21/2017 and now this has been a bad year I just turned 61 in November & am really afraid of it coming back..I cant even look at the scar on my back I also have 2 on my side from the 2 chest tubes but am happy they caught it early..I wish everyone luck & stay positive

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