MAC and Lung Cancer

@vickiz999 Thanks for sharing your experience with us. Please keep us updated as you have biopsy or CT-have you decided which?
Also, welcome to the group. We're glad to have you.

@kathyjjb Hi Kathy,

I picked up a copy of the report yesterday and it says it's a 1.2 cm middle lobe FDG avid pulmonary nodule, suspicious for malignancy. Lymph nodes not involved. So it doesn't sound good. I just have to wait for the bronchoscopy/biopsy and do a lot of praying. Hugs Barb

Hi pacathy,
Didn't include all details above - but recent scan showed small cavity which of course is pushing UPenn Pulmo and ID Drs to have me start Big 3. Before starting them, I thought I'd see a Functional Medical Dr - either to seek alternative treatment or to get stronger to tolerate meds/side effects better. Her thought was - cavity might be from mold (her tests showed aspergillus mold) - maybe not from MAC. (Her thinking is - Just because B follows A, doesn't mean A caused B!) She spoke with the radiologist who read my report. He agreed - it's not 100% certain cavity is from MAC. So question is - why start meds if cavity is not from MAC?
At a crossroads now -just got a plan from functional Dr to address aspergillus. It's involved! And also long! And those drugs have lots of side effects too. Another big factor is that Functional Med Dr believes that underlying mold condition can "cause/impact" you getting MAC in the first place - and getting it again after treatment. - so getting rid of it is important.

Not sure what to do yet - but will get another scan end of December to see how things look - probably before starting any meds.
To answer your question - I started Neb 7% saline Oct 10/2 and using Aerobika, taking NAC and glutathione, Manuka honey, exercising/treadmill, using "Autogenic Drainage App", sterilization and water precautions. I feel great (thankfully). Which is another reason decision to start meds is difficult.
Shout out to NTMIR rep in our area - learned so much from our rep. If you are not already connected there - Next Zoom meeting for our region is Dec 1. (ntminfo.org - click on events)

Best wishes!

@pacathy
Hi, I am scheduled for a bronchoscopy/biopsy on Nov. 25th. The size of the nodule is 1.2cm and the radiologist report states suspected malignancy. I never knew that MAC disease could turn into Cancer, but appears in researching it that it can. I wish I had known that because I have been doing a watch and wait for 2 1/2 yrs. I think I would have started the meds had I known.
If it turns out that it's not cancer, I am planning to tell the Dr. I want to start the MAC meds. Hoping for the best outcome but prepared for the worst. I have a pretty good attitude towards dying. My sister died at 51 from lung cancer. I am 77 and so I feel fortunate that I have lived this long. Take care, Barb

@bbeers I'm glad you're getting the biopsy anc wish you the best. Be sure to keep us updated.
I curious-if you don't mind sharing, which Penn doc do you see?
I don't have MAC, just bronchiectasis. I was thought to, but finally had a bronch a couple years ago, and it was negative so I haven't been in the IR group.

@pacathy Thanks for the response. Im going to wait it out and do the CT scan . These biopsies were really hard on me. The first one completely missed the Mac and because my doctor was so adamant the it was cancer he failed to investigate further. The second biopsy indicated MAC with 4 mm cavitary that was also missed by CT scan three months prior . None of the doctors seem to understand the importance of airway clearance in my case nor are they concerned about reinfection . Im just getting pounded hard with antibiotics orally , inhaled and now they want me on a picc line. Thanks for responding and tolerating my venting .

@bbeers It's good you have the bronch scheduled so soon. Still could definitely be an infection. I'm praying for you and all of us. Mine is 0.8 cm. I have had an alarming number of CT's, so my Dr scheduled an x-ray (my request) as follow up to see if it's still there. She had indicated that it was also seen on my x-ray, which is why she agreed to my request.

@vickiz999 Vickie, feel free to vent here anytime. Most of us have at one point or another. Are you seeing any of the docs in the Mac and bronchiectasis network? If not, I think it would be worth it. It sounds like you're going thru a lot and are not that confidant with docs. I hope your CT is stable or shows improvement.

I am sending good thoughts in the air for the best outcome.

@kathyjjb

Thank you Kathy. Have you had a PET scan? The reason my Dr. suggested it was because it would show if anything was going on with the Lymph nodes, where the bronchoscopy wouldn't. Prayers for you too. Thanks for caring.