1. < MAC & Bronchiectasis

MAC or cancer?

Posted by churlgurl @churlgurl, Sep 22 3:16pm

I was diagnosed at NJH with bronchiectasis, MAC, and GERD in 2018. I also have Relapsing Polychondritis, an autoimmune disease that attacks cartilage. Told just below 50% collapsed trachea. I have done airway clearance twice a day since 2018, and doing fairly well. Recently have had numerous symptoms chills, night sweats, fatigue really bad, significant increase in respiratory issues. Pulmonary and primary ordered CTS (lungs and throat), blood work, and pulmonary function tests. PFTs have decreased each time, doc says indicates a blockage.

Got both CT results. Throat, they did not even address collapse despite me telling them that is what we were looking for. Just said no masses or tumors present! However, CT showed a very significant change in left lower lung. This area has been followed for a while, along with other areas of lungs. It has been slowly increasing in size. This result showed a 4 cm growth in size from 1.6 cm to 5.7 cm, describing a bilobular spiculated mass. Recommended PET scan and biopsy. Called pulmonary doc last Wednesday with result. I have heard NOTHING from doctor.

As MAC is slow growing so doubt this is MAC. I also have aspergillus but also doubt aspergillus would have grown this much in 6 months. I looked up spiculated masses and said they are almost always malignant. Anyone have any experience with this happening to them? I also read that at my age (69) a mass of 5.7 cm does not have a good prognosis.

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pweg | @pweg | Sep 23 7:33am

I had something similar, but different history. I had an incidental finding of lung nodules that were thought to be benign. After 2 years of CT’s every 6 months to monitor, one doubled and spiculated. Went for PET and oncologist said likely cancer (90+% confidence). I opted for lung resection with biopsy in the OR rather than biopsy first. That is when I learned I had MAI (no bronchiectasis). It was a “mimic” granuloma of MAI infection. Now I do saline & airway clearance and so far so good. I was told that MAC/MAI can mimic cancer on scans. Hope that is your outcome as well.

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1 reply
churlgurl | @churlgurl | Sep 23 8:00am
In reply to @pweg "I had something similar, but different history. I had an incidental finding of lung nodules that..." + (show)
@pweg

I had something similar, but different history. I had an incidental finding of lung nodules that were thought to be benign. After 2 years of CT’s every 6 months to monitor, one doubled and spiculated. Went for PET and oncologist said likely cancer (90+% confidence). I opted for lung resection with biopsy in the OR rather than biopsy first. That is when I learned I had MAI (no bronchiectasis). It was a “mimic” granuloma of MAI infection. Now I do saline & airway clearance and so far so good. I was told that MAC/MAI can mimic cancer on scans. Hope that is your outcome as well.

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Thank you for responding. I did know that my MAC could sometimes change to cancer and that MAC can sometimes be mistaken for cancer. My concerns are that mycobacteria is slow growing. I had this happen in 2018 when I was originally diagnosed with MAC and bronchiectasis. Took same path as you. Had been sick with no diagnosis for 4 years. A thoracic surgeon saw my CT and recommended resection and was diagnosed. Many docs since then have said that was a drastic solution. I disagree as I was getting sicker and sicker. I believe without that resection I never would have been diagnosed and possibly died, as a friend who lived 1 mile from me did (after she was finally diagnosed with same condition but too late to save her).

My concerns regarding cancer come from the rapid growth in 6 months, along with the 5.7 cm size. This one has grown 4 cm in 6 months. The last one in 2018 had only grown 1 cm to a size of 3.4cm when they did the resection. Mycobacteria being slow growing seems it would not have grown 4cm if it was mycobacteria. Maybe I am wrong about that, I don’t know. But I have been sitting here for almost a week with this result with neither my pulmonary, nor primary doc calling me or returning any response to my messages. To just leave me with no input on this result seems almost cruel. This is a new pulmonary doctor (I moved) and I uncertain of his expertise in MAC at this point.

Your response helps with some of the worry. Thanks you.

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1 reply
pweg | @pweg | Sep 23 9:23am
In reply to @churlgurl "Thank you for responding. I did know that my MAC could sometimes change to cancer and..." + (show)
@churlgurl

Thank you for responding. I did know that my MAC could sometimes change to cancer and that MAC can sometimes be mistaken for cancer. My concerns are that mycobacteria is slow growing. I had this happen in 2018 when I was originally diagnosed with MAC and bronchiectasis. Took same path as you. Had been sick with no diagnosis for 4 years. A thoracic surgeon saw my CT and recommended resection and was diagnosed. Many docs since then have said that was a drastic solution. I disagree as I was getting sicker and sicker. I believe without that resection I never would have been diagnosed and possibly died, as a friend who lived 1 mile from me did (after she was finally diagnosed with same condition but too late to save her).

My concerns regarding cancer come from the rapid growth in 6 months, along with the 5.7 cm size. This one has grown 4 cm in 6 months. The last one in 2018 had only grown 1 cm to a size of 3.4cm when they did the resection. Mycobacteria being slow growing seems it would not have grown 4cm if it was mycobacteria. Maybe I am wrong about that, I don’t know. But I have been sitting here for almost a week with this result with neither my pulmonary, nor primary doc calling me or returning any response to my messages. To just leave me with no input on this result seems almost cruel. This is a new pulmonary doctor (I moved) and I uncertain of his expertise in MAC at this point.

Your response helps with some of the worry. Thanks you.

Jump to this post

Wow, the no response is awful. Have you called? Or switch and ask an oncologist to look at the scan and decide if you should have a biopsy? I switched to an oncologist at the time and things moved very quickly.

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churlgurl | @churlgurl | Sep 23 10:38am

I’ve called both primary and pulmonary, also left messages online. Heard from neither, very frustrating. Last time (2018) my CT was sent to a thoracic surgeon. My biggest frustration at this point is no response from my teo doctors involved who have seen result. I can think of no reasonable excuse for no contact at this point. My previous pulmonary always told me never let anyone conclude you have cancer without me checking your scan first. I am considering just having my CT sent to him for an opinion. Probably get a response from him quicker than these docs. I live in an area that manages health care like it was 30 years ago. Shocking at times, however I thought I had found two good doctors to manage this condition. Seems nothing around here is ever urgent or even important. Had been making plans to move back to where I used to live when several changes caused delay.

Thanks again for your responses.

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