After lobectomy

[Breathless2]

Hi all, I’m new here.. I had a vats upper left lobectomy for nsclc stage 1A nodule 12 weeks ago. Clean lymph nodes. I have a strong family history of lung cancer so I was in an annual screening program. It was found with my 2nd annual scan. I was asymptomatic. 57 year old female. Otherwise, pretty healthy! Quit smoking 4 years ago but a long time smoker. No copd or emphysema. I was back to work in 2 weeks. No further treatments. Pretty easy recovery for me overall. My problem-question is that I am still pretty short of breath at times. Yesterday I saw a pulmonologist. I had a chest X-ray, alls good. Breathing study better than he expected it to be. Has anyone else had this experience? He wants to put me on trelegy. He is one of the best (Vanderbilt) but he wasn’t sure what is going on. If after 2 months on this med with no results he will do a cardiac study! I don’t know if expecting to not be breathless at this point is expecting too much? I am exercising, and carrying on with normal activities but often I have to stop talking, walking, thinking! to catch my breath. What say you experienced people?

[rdflynnjr]

Hi Breathless2,

I had a lower left lung lobectomy via VATS for stage 1A nsclc with clean lymph nodes about 11 months ago. No subsequent chemo or radiation. I recovered quickly, although it took about six months to be back to relatively normal. When I exercise and simultaneously concentrate on deep, regular breathing, I do pretty well. When I experience an unexpected exertion I often find myself almost gasping for air. It is like I don't breathe adequately unless I concentrate.

I feel that, in my case, I just need to be aware and subsequently adjust to my partially diminished lung capacity.

I know nothing about trelegy, but am interested to know about your experience if you choose to take it.

Rick

[Breathless2 in reply to rdflynnjr]

Thanks rdflynnjr. 11 months out and still sob? Ugh.

[Denzie Moderator Volunteer]

Surgery, even a successful vats surgery, still causes trauma to the muscle and ligaments that support breathing. Often patients will unconsciously try to prevent pain by not breathing as deeply as they ordinarily might.

My vats was for a pericardial effusion. To help me get back to my best capacity I followed a series of exercise videos that were produced by Donna Wilson and Memorial Sloan Kettering. Their goal is to strengthen and support the muscles that support breathing

m.youtube.com/watch?v=iIrAU...(Not working as expected?)

[Breathless2 in reply to Denzie]

Very good Denzie. I am already doing some of these for fitness. I love the focus on breathing and opening up the chest! Thank you for sharing!

[JeanE41 in reply to Denzie]

I love those exercises. Is there a website where I can get them? Thank you so much for sharing them.

[GailO in reply to JeanE41]

It’s a YouTube video. You can save it there, or email,it to yourself and save in a folder for handy access. youtube.com/watch?v=iIrAUL_...(Not working as expected?)

[JeanE41 in reply to GailO]

Thank you GailO. Looking forward to trying them.

Jean

[Denzie Moderator Volunteer in reply to JeanE41]

There are about 5 or 6 on YouTube as gailo mentioned. I found that many of them mimicked the exercise I was getting at Livestrong but without the machines.

[Steph60]

I was 53 years old when my cancer was found to be stage 1B, and finished chemo when I was 54. About 6 months after chemo I also experienced what I thought was shortness of breath and went to see the pulmoniologist- he did all kinds of test and every showed nothing. I determined that it was my new normal and tried to this day, 4 years later, to make every attempt to walk daily and get a cardio workout twice weekly. I still have yearly ct’s with contrast for another year, but am always and am sure will continue to be nervous each year since I was asymptomatic. I had never smoked and was doing op- testing for surgery on my heart valve when the cancer was discovered. Hope you like me continue to be thankful that my cancer was found as early as it was.

[Breathless2 in reply to Steph60]

Thanks Steph60. I am very grateful it was found early and removed! I’m still trying to let that sink in. I didn’t know when I went in for the surgery if it was cancer. I was told when I woke up so it’s still new and fresh in my world. I will have scans every 6 months for 2 years, then once a year for life. Did you have a lobectomy? Still sob?

[Steph60 in reply to Breathless2]

yes, I had my upper right lobe remove via VATS. I had/have CT's every 6 months for 5 years then I will have chest x-ray for the rest of my life. The shock of being told you have/had cancer is quite a shock to your system, give yourself time to heal! I me know how your recovery goes.

[Feelingblessed2013]

Hi Breathless2,

I had my upper left lobe removed almost 5 years ago for stage 2 lung cancer. You are only 12 weeks post surgery, that's not very long. Try to take it easy, listen to your body, rest when you need to (even if it's just sitting for a few minutes) and when you get short of breath, try "pursed lip breathing", it helps me. But most importantly, give yourself time to heal.

[Breathless2 in reply to Feelingblessed2013]

Thanks KatherineK, I can be impatient especially with myself. What is pursed lip breathing? Are you still breathless 5 years later?

[Feelingblessed2013 in reply to Breathless2]

My breathing has been getting a bit worse lately, but I also have emphysema.

Pursed lip breathing is actually something I learned on line from another emphysema patient, you take a deep breath in through your nose and blow it out through your mouth, but "purse" your lips like you are blowing out a candle. I have yet to have to use my rescue inhaler, when I get SOB (short of breath) I stop whatever I'm doing and do the pursed lip breathing a few times, it has always (at least so far) helped me feel better.

[JeanE41]

Hi Breathless2. Welcome. Yes shortness of breath following VATS is common. My surgery removing the left upper lobe was in 2015. I still become short of breath much easier than before the surgery. I am also affected by air pollution and allergens. After 3 years it has become my new normal. Since there is that much less lung tissue to oxygenate the body, we do not function as well as before.

It sounds as though you are doing extremely well after your surgery. Keep up the good work. Denzie's exercise video looks great to strengthen your chest muscles and increase your lung capacity. I wish you continued improvement and a long and cancer free life.

Jean

[Breathless2 in reply to JeanE41]

Thank you JeanE41. I appreciate the feed back! I have a lot of allergies also. Dreading how I will handle them.

[JRuthI1946]

Congratulations ..going back to work after surgery at only 2 weeks. Good for you.

I am 4 yrs post left upper lobectomy. My pulmonologist says I am doing great.

I am sure he is right...and I'm happy to hear that...but I am still short of breath with activity. He keeps telling me to exercise and I keep telling him I would if I could.

I try..walking 2 miles with the dog. Often have to finish early. Climbing the stairs..A piece of cake.....until I stop at the top......then it takes a minute or two to like I can breathe easily.

My thought process is....we are all so different ( a NEW thought) !!!! Ha.

For myself I know that the weather and barametric pressure changes have a lot to do with how i feel and how active i can be. My asthma also influences my breathing

To answer your question.....you are doing fantastic. Good for you. Only you know how you feel. In other words, I don't know the answer. Think on a scale of 1 to 10..10 being really great....when you are short of breathe where on the number scale are you? Over 7...wonderful. 5 to 7 ..Good. this may be your new norm..or you just need more time to get where you think you should be

Continue your progress.

Good luck.

[Breathless2 in reply to JRuthI1946]

Thanks for your reply. I think I am also very bothered by the weather and barametric pressure. I am able to exercise. My pulmonologist advised to go for endurance, pushing through. I’m trying to do that. Walking at a quick pace on my treadmill for 30 minutes. Some days, as you also, are easier than others. I try to struggle through even the hard days. I do think I need more healing time before I resign to taking a daily medication. I don’t want to take something I don’t need! With your number scale, I’ve been at times a 5 and at times higher! I guess what I can take away from all of you is to give it more time.

[mbrad24]

I also had a lobectomy in 2014 for Stage 1 nsclc and since then have always had trouble with breathlessness. Like you, nothing else has helped. I had the cardiac workup and there is still no reason for the breathlessness. I have the most trouble upon walking, especially if there is even the slightest incline. It is very embarrassing as I have always been a very active person until I had this procedure.