Question regarding lung surgery

Posted by Jen_b @jenblalock, Apr 18, 2017

I just had my 4th CT Scan and the results showed my 2 cavitary lesions unchanged from the last scan 4 months ago. I am now free of NTM disease and have been for a year. I feel good. No coughing at all and I'll be stopping meds in 9 days. I do not suffer from shortness of breath and feel perfectly normal (except side effects from meds). I sent the CT Scan report to my doctor at NJH and she wants me to meet with CT Surgeon during my next visit with her (May 1). I think she might be thinking of surgery to remove one of the lesions. I've read a lot of articles and it seems that surgery is indicated when NTM medical therapy has failed which is not my case at all. Medication was very successful and my sputums were negative almost immediately. I have discussed this with my local pulmonary doc in the past and he feels surgery would be too drastic just to possibly prevent another infection.

My question is has anyone heard of removing part of a lung that has a cavitary lesion to prevent another infection when the patient was otherwise healthy?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Terri Martin, Volunteer Mentor | @windwalker | Sep 6, 2017

In reply to @kate1320 "I too have been on 3 meds for 1 year and the sputum comes back negative..." + (show)

@kate1320 Hi Kate. I attended the Spring conference in D.C. The experts there all conferred that 'clofazimine" was an excellent choice for treatment. That they have gotten good results from it. That drug is considered 'open label', the trials went well with it.

Jen_b | @jenblalock | Sep 7, 2017

In reply to @kate1320 "I too have been on 3 meds for 1 year and the sputum comes back negative..." + (show)

Hi Kate, I took Clofazimine for treatment. I had no side effects. It did turn my skin darker but it just looked like I had a nice tan. It's been 4 months since I've been off meds and my skin still retains the tan. I read that that can take 6 months to a year to go away. If you read about it, it sounds like your skin is going to turn an awful color but not so.

dmarks | @dmarks | Oct 29, 2017

I am actually a patient of NJH and have had two lung surgeries during my first infection. My pulmonologist felt is was drastic as well and I have to admit that I became disease free for a few months but was reinfected......So now I am going down new antibiotics again. My advice would be no surgery if you are free at this time and experiencing symtoms. Let me know who your Dr. is..

dmarks | @dmarks | Oct 29, 2017

In reply to @dmarks "I am actually a patient of NJH and have had two lung surgeries during my first..." + (show)

NJH is a great place with great Dr.'s .. however their approach can seem drastic to others. Their philosophy is to get rid of areas that may harbor a reinfection if that makes sense. I am not sure what the statistics are around this approach....

dmarks | @dmarks | Oct 29, 2017

In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)

what drugs are you on? I am scheduled to begin the clofazamine and am nervous...

Terri Martin, Volunteer Mentor | @windwalker | Oct 30, 2017

In reply to @dmarks "I am actually a patient of NJH and have had two lung surgeries during my first..." + (show)

@dmarks, I hope that you do go to the Mayo in Az. I would be VERY curious about what they say about the lobectomies. You may have had severe enough damage to have needed that done. Do you also have bronchiectasis?

Rona F | @ronaf | Nov 6, 2017

In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)

Hi Jen, Here's a link to the MAC conference at Jewish Women in CO. 2016 https://www.nationaljewish.org/ntmvideos2016 There's information and a 30 minute video from Dr. John Mitchell, a surgeon. I'm meeting him next week. I was diagnosed w/ MAC spring of 2016. I'm still on several antibiotics. I have a cavity in my one lung and a nodule in the other. My infectious disease/lung Doc at Stanford Medical things surgery is a good option for me. He's concerned about reoccurrence, which I hear is quite common, & more so w/ those of us who have cavities in our lungs from the MAC bacteria. I'll know more once I talk w/ Dr. Mitchell. I also have had negative sputum sample every month & 12 so far in all. The surgery is elective and is individual decision. I'd like to hear from people who've had the surgery. All the best, Rona

Jen_b | @jenblalock | Nov 15, 2017

In reply to @dmarks "I am actually a patient of NJH and have had two lung surgeries during my first..." + (show)

@dmarks Thank you for this invaluable information! My doctor at NJH is Dr. Huitt whom I respect but am glad that I have two opinions. I just spoke with her via phone again after she reviewed my last CT Scan and she did not mention the surgery. One lesion has shrunk and bit while the other remains the same. I am waiting for certain at this point.

bomar | @bomar | Jan 5, 2020

In reply to @windwalker "I am not there yet. " + (show)

What is NTM

Colleen Young, Connect Director | @colleenyoung | Jan 5, 2020

In reply to @bomar "What is NTM" + (show)

NTM = Nontuberculous mycobacteria
Nontuberculous mycobacterial (NTM) lung disease is a general term for a group of disorders characterized by exposure to specific bacterial germs known as mycobacteria. There are many species of NTM. Mycobacterium avium complex (MAC) is the most common, accounting for 80% of all NTM lung disease cases in the US.

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