Partially collapsed lung

Hi Juliette, you must've been shocked to learn you had lung cancer at 47, especially as a never smoker. I'm bringing in fellow NSCLC members @janlanderz @michaelw9dy @erv58 @richcolleen and @burrkay to see if they have experience with collapsed lung following a lobectomy.

Juliette, I'm trying to follow the timeline. The surgery was April 2020. And the partially collapsed lung (secondary spontaneous pneumothorax?) was discovered April 2021. How long before the scan were you feeling like something wasn't right? What treatment, if any, is being recommended?

Colleen, thank you for the reply. Yes surgery was April 21, 2020 and the collapsed lung showed on my scans April 16, 2021. About two weeks prior I started noticing a wheezing sound when I would lay down. It was also unbearable to wear a bra but that wasn’t necessarily new just worse. I’ve been dealing with chronic right shoulder pain and upper back pain since surgery. I still do not have full feeling back on my chest and was told I probably have costochondritis in my ribs. My physical therapy had just ran out for the year the end of March so it was easy to brush the pain and discomfort off as just what I had to deal. Right now they are recommending weekly x-Rays to see if it heals. X-Ray last Friday showed no improvement yet. Wondering if anyone has experienced this and how long it took to heal and what their symptoms where.

@marshall8318- I'd also like to welcome you to Mayo Clinic Connect. I am the mentor for the lung cancer group and have lung cancer from smoking.
Costochondritis is an inflammation of the cartilage that connects a rib to the breastbone (sternum). It apparently has no cause. I'd like to ask you a few questions if you don't mind. Did you have open-chest surgery for your lobectomy? It takes a very long time to heal from any chest surgery, especially when something like a lobe is removed. I've had 2 lobectomies. I've never had a lung collapse but I have had a broken rib from my ribs being spread. Also, why were you in PT?

@merpreb Yes, surgery was open chest. The PT was for my back pain and shoulder pain. Did you have upper back and shoulder pain from your surgeries? A broken rib from the surgery must have been awful. You have been through a lot. Thank you for being a mentor on Mayo Connect. How long did your recovery take from the operations? Prior to my diagnosis I was a runner and and did physical training classes 4 times a week. At the moment I am doing PT at home and a 30 min walk everyday. I am hopeful to get back to a more active life. My doctor says I can run (before collapsed lung) if I want but it hurts my back and area where I have fluid where lobe was removed. Was at Mayo yesterday and x-Ray showed improvement on the partially collapsed lung so that was good news. Oncologist is going to do a referral to pulmonary to check on the fluid he says he would have hoped it would have resolved a year out from surgery.

@marshall8318- Good morning Juliette. I'm glad that you are doing better. There's no doubt that having any type of lung surgery is a tough one. As my Thoracic Surgeon told me, you have to mess with the chest architecture and that's a whole new realm to deal with. And from my two open chest surgeries, I quite agree. It took me, for both surgeries about a year to fully recover, but keep in mind I did not have a lung removed. My first surgery, although the shorter of the two, left me in more pain. I had twitches and muscle spasms that weren't pleasant at all.

One day before Thanksgiving I took it upon myself to help carry the shopping bags in and of course I grabbed the turkey. God forbid it might fly away! I felt a "something" when I lifted it and thought nothing of it until later on. Broken ribs are painful for sure. Don't lift up Thanksgiving turkeys up after chest surgery!

PS- It is my pleasure to be a mentor on Connect and was honored to be asked. Thank you for your nice compliment.

Is it true that you don't have a pulmonologist yet, after a year out from surgery? Who is prescribing your inhalers and other meds for your lungs?
Merry

@merpreb I didn’t have much time today but took a quick look at your blog. I love that you have put your experience in writing. I look forward to reading more of your blog. I’m sure it was healing for you to write it but what a wonderful gift to give others who can connect to how your felt.

My first visit to Mayo I saw a pulmonologist when I was staged. I have not seen one since. They do not have me on any inhalers or meds. Bear in mind I was finishing chemo and radiation in March 2020 as COVID was taking hold. My surgery consult was over video. In April 2020 to qualify for surgery my husband and I had to quarantine and my husband could only drop me off at the front door of the hospital when I went for surgery. Six weeks later at my follow up with the surgeon Mayo was like a ghost town. I think they were limiting my trips to MN for appointments. It was a scary time to leave the house with limited breathing and COVID. Recently I connected with a support group where I live and the social worker has given me some great advice. If I had known earlier I should have reached out to one at Mayo to help me navigate things. I look forward to seeing the pulmonologist.

I feel better knowing your surgery recoveries took about a year. Maybe I’m close to rounding a corner!
Juliette

@marshall8318- Juliette- What a miserable, lonely time that must have been while you were being treated and operated on for lung cancer. So many people had to be without family during times like that. It takes incredible strength to get through those times, as a person and as a couple.

I'm so glad that you can identify with my feelings. I think that after the fluid is drained, or it is absorbed you will begin to feel so much better. Were you given any special exercises to strengthen your muscles with weights? Are you continuing with them or aren't they advised at this time?

Do you know about pursed-lip breathing?

@merpreb I was doing some strength training but no weights right now till my lung is healed.

I don’t know about pursed-lip breathing. I’ve been using a breathing app for deep breathing exercises to help with my anxiety. I will definitely look up some information on pursed-lip breathing.

Thank you so much!
Juliette

@merpreb Thank you!!