Surgery for MAC

Posted by jbud12 @jbud12, Jan 22 12:51pm

Hi, I was diagnosed with MAC 2 years ago. My pulmonologist sent me to have a biopsy of my lung ( when we were still trying to figure out was I had…). The surgeon did a lower left lobectomy and removed a 1/4 of my lung. My pulmonologist wasn’t happy about this. Turned out it was MAC. Has anyone ever had surgery for MAC? Did you still need antibiotics? Thank you

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Rick | @rstel7272 | Jan 24 9:08am

In reply to @suzyqueue "My pulmonologist and thoracic surgeon refuse to remove my portion of the lobe with the cavity..." + (show)

Wow, sounds just like my case today.
- Rick

Rick | @rstel7272 | Jan 24 9:19am

In reply to @irene5 "But you knew you had cavitory MAC before they did that first surgery yes Rick? I..." + (show)

Yes, the intent of the surgery was two fold. One to remove the cavity, two to get 3 biopsy samples, one from each lobe on the right side. At the time, MAC was positive but Wegeners granulomatosis was suspected. With the resection unsuccessful, so were 2 of the 3 biopsy samples all due to the scar tissue. The one remaining sample was eventually sent to the NJH pathologist which confirmed just the MAC.
Wegener's would have required low dose radiation treatment, so I started the big 3 and Amikacin iv the next day.
- Rick

irene5 Irene Estes | @irene5 | Jan 24 9:36am

In reply to @rstel7272 "Yes, the intent of the surgery was two fold. One to remove the cavity, two to..." + (show)

Well you have certainly done all the right things Rick. God bless America - such struggles that none of us would have predicted. Maybe it’s a good thing we don’t have a crystal ball! (Irene)

Toni D. | @tcd518 | Jan 24 11:54am

In reply to @jbud12 "This is the way mine was supposed to go. A biopsy first. The surgeon said since..." + (show)

Jesus, jbud12, can they do that? Just switch up a biopsy to a lobectomy? Don't the surgeon and the hospital need informed consent to do that? It sounds like the stuff of public radio exposés and long-term lawsuits. Maybe it's time to call Mayo or NJH. Good luck going forward.

jbud12 | @jbud12 | Jan 24 1:52pm

In reply to @tcd518 "Jesus, jbud12, can they do that? Just switch up a biopsy to a lobectomy? Don't the..." + (show)

My pulmonologist told me surgery was a possibility. That if the surgeon felt thats what was needed he would do that. I know my pulmonologist was a little surprised tho…
I want to find another pulmonologist though, as my current one hasn’t done any additional testing. I am just on Wixela and Albuterol. Its hard find a Dr that understands MAC

irene5 Irene Estes | @irene5 | Jan 26 5:41am

In reply to @pweg "Hi, yes! I have the same story. Just last month had a partial lobectomy (upper right)..." + (show)

@pwegCancer shows up differently than MAC ( suspected or otherwise) and will light up on a PET scan. I’m sorry you went through that. Irene5

pweg | @pweg | Jan 26 6:51am

In reply to @irene5 "@pwegCancer shows up differently than MAC ( suspected or otherwise) and will light up on a..." + (show)

@irene5 - thank you. it did light up on the PET and looked just like a malignant tumor. It was large and spiculated. It was a necrotic nodule of MAI infection and I’m actually glad I had it removed. The robotic surgery was an easy recovery and they believe they got the bulk of infection and that I will be able to manage it now with nebulizer and ACT. 😊

irene5 Irene Estes | @irene5 | Jan 26 2:59pm

In reply to @pweg "@irene5 - thank you. it did light up on the PET and looked just like a..." + (show)

Oh good! I am so glad for you!

pacathy | @pacathy | Jan 27 6:06am

About 1988, my dad had a lesion in his upper Lt lobe removed because they thought it was cancer. A few days later, they told us it wasn’t cancer, but TB. All the family, including preschoolers, were in midst of being tested when they told us it was not TB, but a similar organism.
I was a nurse in another state and had asked our infectious disease doc about the my 4 year old’s presumed TB exposure on a recent visit to my dad. The first question he asked was if they sure it wasn’t an NTM since it was common in Atlanta region. He was right. That’s why an ID doc is helpful.

Rick | @rstel7272 | Jan 27 9:32am

In reply to @irene5 "@pwegCancer shows up differently than MAC ( suspected or otherwise) and will light up on a..." + (show)

By the time I got my PET, the nodule in question dramatically shrunk in size (over 3 weeks) but the lymph nodes showed an uptake. Months later I had a SuperDimension bronchoscopy that confirmed it was aspergillus. I guess you never know what these test will show?

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