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Mucinous adenocarcinoma of lung Stage 1

Posted by pb50 @pb50, Sep 11, 2023

I am a 73yo woman recently retired with RA and history of smoking until 2017. On May 25th I had a VATS surgery to remove a nodule measuring 15mm on each axis from lateral edge of left lower lobe. We had been watching this for five years, when it was first detected at 7mm in Medicare screening for former smokers. Since it had doubled in size at the 2023 CT, the pulmonologist and cardio-thoracic surgeon wanted to remove. I didn’t get second opinion, which was entirely out of character for me. In any event a wedge resection was done first and it was (surprisingly) malignant for an apparently rare-ish lung cancer - dubbed the non-smoker lung cancer. It was graded a Pathologic stage: pT1c pN0. All margins and nodes were clear. And clearly not aggressive since it took five years to double in size and was still < 2cm. And conceivably we could have stopped there, but he took the lower left lobe as well. Fine. That’s what I get for skipping a second opinion.

Five days later they removed the chest tube saying “right on schedule!” In the next hour the discharge nurse went through five ABD pads on site of chest tube wound. I realized that I would need to contort myself to put new bandages on while the wound was gushing fluid, so I requested a case mgr and a period of home health. That was one of my smarter decisions. But for two straight days I made a bed of old sheets, beach towels, and mattress pads. And I lay there and drained and drained and drained. Eventually it slowed enough to keep a bandage on. And about that time home health showed up to help with that.

So I heal but still have labored breathing on exertion and severe rib and episodic nerve pain. I did try Gabapentin - but discontinued due to psychotic dreams. I don’t take narcotics and can’t take NSAIDs for non-related reasons. The very best drug for me was generic flexoril that relieved muscle spasms on breathing and helped me sleep.

Four months later I still have tight constraint in ribs from just anterior to excision site to under breast, and if I’m lying on that side at night I can tell I’m avoiding deep breathing. If I get up at night and come back to bed I find myself gaasping when I lie down. I’m still doing breathing capacity exercises but they don’t seem to be helping. Even sitting I can only intentionally take deep breaths when I brace for it. If I unexpectedly sneeze or yawn, it is hard to achieve.
I changed pulmonologist and he did an X-ray that showed marginal effusion but too little for
tapping.

A looooooong intro to ask -
* Is this pain typical this long after surgery?
* should I have full lung capacity back?
* Are there guidelines somewhere about flying cross country in pressurized cabin?
* is there something else I should be doing?

I know I should feel relieved that it’s out. But frankly I think I might well have died with it instead of from it and saved myself all this pain and drama. So I’m fighting depression on top of everything else.

I know I’m lucky and am working on gratitude. 🙂 thanks for reading this ..

Interested in more discussions like this? Go to the Lung Cancer Support Group.

pb50 | @pb50 | Sep 16, 2023
In reply to @dwood003 "pb50 Reading your post sounded like a scene in a horror movie. Vats was an acronym..." + (show)
@dwood003

pb50 Reading your post sounded like a scene in a horror movie. Vats was an acronym I was not familiar with.
I had "Robotic surgery" a" lobectomy of the left upper lobe The surgeon sat remotely but in the same room. Like a video game watching a screen while operating the controls with both hands and feet and voice recording in detail every procedure. VAT? The anesthesiologist was more hands-on. I had two small incisions, one for the camera, and the other for the "DaVinci Machines" tools, which were closed after surgery. Then another incision for a drain, and the receiver hung on the mobile tree next to my bed. When I was ready to go home they attached a similar but smaller container to my body and a nurse came to my house every day to check it, shortly thereafter she removed it, stitched it, gave me pads to cover it, and a kit to remove the stitches. I am 85 and seldom have pain except when my brain is trying to make me aware of something being untreated, no BS. They gave me oxycodone which I still have un-opened. It has been 5 years. A year ago I started aspirating, they discovered during my surgery they had severed the nerve to my left vocal (fold) chord, it is paralyzed and had become distorted allowing things I swallow to enter my airway. That's a story for another day, I am dealing with it.

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dwood003 Everything is a struggle isn’t it? VATs is as you describe - video assisted thoracic surgery. One incision for camera, One for irrigation, and One for tools. The chest tube was inserted in the same incision they used for the excision. My nodule was on the outer edge of the left Lower lobe, so easier to access that some locations.

REPLY
pb50 | @pb50 | Oct 23, 2023
In reply to @vic83 "Dear PB50 - I know your feeling... 1) I had VAT surgery (wedge resection) on 5/19...." + (show)
@vic83

Dear PB50 - I know your feeling...
1) I had VAT surgery (wedge resection) on 5/19. In the beginning I had a lot of pain and took Gabapentin which helped. I am now off of it. I have occasional needle pricks, and I am still sore with a violent sneeze, and my chest feels stiff when I take a deep breath. Also I have very numb feeling under breast and to side - my Mayo surgeon told me it can take up to a year for nerve pain to go away.
2) This was my second VAT surgery and my breathing was not quite the same after the first. I could do lots of walking on flat ground without much issue, but I get short of breath if I am moving and bending. This is now a bit more pronounced. I don't really think it will go back to "normal". Can be heart as well as lungs when it comes to shortness of breath.
I have several oximeters and check my oxygen levels. At rest I am very good but with exertion my oxygen level goes down even below 88
3)I took an international trip before second VAT - no problem. I did check with my Pulmonologist before and did an oxygen titration test on a treadmill. I needed temporary night oxygen after both surgeries, and then went off of it at 3 months. I did overnight oximeter test to be sure.
4) What else to do? WALK and take good care of yourself

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Just to follow up, I saw my pulmonologist last week. My pulmonary function tests were not as strong as a couple of years ago when I last had it. But not bad considering I lost 20% of my total physical capacity. I am distributing sufficient oxygen to my body so I think I should be ok to fly.

My ribs from under my breast to the bottom of my side remains stiff and tender when I take a deep breath. Sneezing and yawning doesn’t seem to work right. I’m having a follow up CT in two weeks so maybe if there is inflammation or hairline fractures it will show up. I don’t really expect it to show much.

It ain’t gonna be original equipment ever again. I will just have to get used to it. 🙄

REPLY
1 reply
vic83 | @vic83 | Oct 23, 2023
In reply to @pb50 "Just to follow up, I saw my pulmonologist last week. My pulmonary function tests were not..." + (show)
@pb50

Just to follow up, I saw my pulmonologist last week. My pulmonary function tests were not as strong as a couple of years ago when I last had it. But not bad considering I lost 20% of my total physical capacity. I am distributing sufficient oxygen to my body so I think I should be ok to fly.

My ribs from under my breast to the bottom of my side remains stiff and tender when I take a deep breath. Sneezing and yawning doesn’t seem to work right. I’m having a follow up CT in two weeks so maybe if there is inflammation or hairline fractures it will show up. I don’t really expect it to show much.

It ain’t gonna be original equipment ever again. I will just have to get used to it. 🙄

Jump to this post

I try to take good care of the original equipment.
I have been having increased shortness of breath lately (recall I had VAT surgery May and 3 sessions SBRT on different lobe in Aug).
The VAT pain is gone, and I just have numbness under breast (like a belt). However, I have never gotten back quite to where I was before surgery. I have soreness when I take deep breath and my diaphragm feels sore - not like the VAT pain. They advanced my CT scan date, and it did show changes in my lungs - apart from my multifocal lung cancer, I have fibrosis/Interstitial issues, and something on CT scan. So, to start they gave me 10-day dose of antibiotics, but don't know if I am better. I think my SOB/dropping oxygen levels with exertion may have more than one cause. I am fine sitting down. But twice this year I have gone to Urgent Care for a Covid test and they put me in ER because I have SOB and low oxygen levels when I present at desk. They make me wait hours, when they see I am normal they release me. It is annoying.

REPLY
pb50 | @pb50 | Oct 23, 2023

Yea I get SOB just changing the sheets on my bed. That may get better but I hope I’m not left with this diaphram/rib cage stiffness.

Thanks as ever for your kind outreach.

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joycegray1940 | @joycegray1940 | Jul 28 5:57pm

Has anyone been diagnosed with mucinous adenocarcinoma? My doctor said it is rare & said I have had it about 2 to 6 years. It looks like pneumonia on the X-ray.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 28 7:14pm
In reply to @joycegray1940 "Has anyone been diagnosed with mucinous adenocarcinoma? My doctor said it is rare & said I..." + (show)
@joycegray1940

Has anyone been diagnosed with mucinous adenocarcinoma? My doctor said it is rare & said I have had it about 2 to 6 years. It looks like pneumonia on the X-ray.

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Hi @joycegray1940, I moved your post about mucinous adenocarcinoma to this existing discussion in the Lung Cancer support group here:
- Mucinous adenocarcinoma of lung Stage 1
https://connect.mayoclinic.org/discussion/mucinous-adenocarcinoma-of-lung-stg-1/
I did this so you can connect with @pb50 @yellowstonelady and others.

Joyce, I see that you also posted this discussion about the treatment you are on
- Mucinous adenocarcinoma: Anyone treated with Tabrecta (capmatinib)? https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-mucinous-adenocarcinoma/

How was your cancer discovered?

REPLY
1 reply
joycegray1940 | @joycegray1940 | Jul 29 4:29pm

I know the feeling about depression. I had depression before the cancer, but now it is worse. The Dr. seems to think I am too old for surgery. I wish they had never found it. They say its been there for several years without me knowing it.

REPLY
joycegray1940 | @joycegray1940 | Jul 29 4:34pm
In reply to @colleenyoung "Hi @joycegray1940, I moved your post about mucinous adenocarcinoma to this existing discussion in the Lung..." + (show)
@colleenyoung

Hi @joycegray1940, I moved your post about mucinous adenocarcinoma to this existing discussion in the Lung Cancer support group here:
- Mucinous adenocarcinoma of lung Stage 1
https://connect.mayoclinic.org/discussion/mucinous-adenocarcinoma-of-lung-stg-1/
I did this so you can connect with @pb50 @yellowstonelady and others.

Joyce, I see that you also posted this discussion about the treatment you are on
- Mucinous adenocarcinoma: Anyone treated with Tabrecta (capmatinib)? https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-mucinous-adenocarcinoma/

How was your cancer discovered?

Jump to this post

My cancer was discovered by taking a wedge of my lung. I had no symptoms; just had bronchitis several times & the steriods took care of it. Had pneumonia once. I also have asthma which is under control. I wish I had never agreed to the biopsy of my lung.

Thank you for responding to my message.

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