Surgery for MAC

Hi, yes! I have the same story. Just last month had a partial lobectomy (upper right) for suspected cancer- turned out to be MAC Intracellulare. I have no symptoms and no bronchiectasis so will be doing saline nebulizer with Aerobika and airway clearance with follow up CTs every 6 months.

Yes, I had a resection not so much for the MAC but for the large cavity it created. Due to the amount of scar tissue, the resection failed (I still had the same recovery/hospital stay). Antibiotics for most of the next 3-5 years.
Now I have aspergillus in the cavity and one of my many Dr's want's to remove the lobe. With consultation with my other Dr's, we decided not to do the lobectomy at this time. It's been a year now and while successful I got a 1st case of nasty covid recently.

I am lucky because my body is very tolerant to antibiotics, other than Amikacin & Arikayce. My adverse reaction to Amikacin in one of the reasons for the non surgery decision.

But you knew you had cavitory MAC before they did that first surgery yes Rick? I mean they didn’t just go in and do that did they? I had a CT scan and then a biopsy first with results. Irene5

This is the way mine was supposed to go. A biopsy first. The surgeon said since my lung was not getting better in spite of prednisone and 2 doses of antibiotics, (not the big 3) he just cut the section out. My pulmonologist wasn’t happy since he just wanted a biopsy. I do not have any symptoms, and am just taking wixela and Albuterol. I just wonder if I’m “cured” or I need to do more.

Why did your pulmonologist ask for a biopsy? I thought the usual next step was a bronchoscopy if something showed up on a CT scan?

Do you feel a lot better after the surgery?

The protocol as far as I know is a CT scan and then sputum collection or even vice versa. If a person can’t produce sputum a bronchoscopy is done and fluid collected is sent off for testing. MAC takes forever to come back from the lab. I am really surprised someone would remove part of someone’s lung that quickly and without consulting the patient’s pulmonologist and the patient - a team discussion . - not to mention the option of taking medication first! I’m still shaking my head. Irene5

Find yourself a good infectious disease doctor who will work with your pulmonologist and answer your questions. Seems to me you are missing more than part of your lung- ( not trying to be flip)- where is your ID doctor in all this?? Do you not have one? They usually work with your pulmonologist on all aspects of this. That’s your missing piece. A CT scan usually comes back with results that say it looks like such and such or is indicative of such and such. When it says it looks like an infection like mycobacterium your pulmonologist sends you to an ID doctor. I realize surgeons might want to cut something out like a bad piece of meat but gee whiz! MAC can come back. Irene5

My pulmonologist and thoracic surgeon refuse to remove my portion of the lobe with the cavity due to MAC still being present and "sprinkled" to other portions of my lungs. They said if the surgery would heal the MAC, they would do the surgery but it's too risky now

You should definitely see an infectious disease doctor too and have at least sputum tests done