Breast cancer survivor, now I have MAC and bronchiectasis

Merry -
It's a way to quantify the amount of bacteria that grows on a culture, instead of saying "positive" and "few, some, many, significant or numerous", they say +1, +2, etc. The higher the number, the greater the bacterial load. There is a scale the tech uses of how many bacteria in the field of view of the microscope, at a specific magnification, to determine the number assigned. With TB, which requires treatment nearly as long as MAC, but with a single drug, +1 is not usually treated unless you are symptomatic or work with a vulnerable population (eg. nurse, elder care, child care.) My pulmonologist does not treat +1 MAC unless you are symptomatic or have visible nodules (indicating pockets of infection) on a CT. Instead he follows closely (visit & sputum test every 3 months, CT twice a year.) to watch for changes.

@sueinmn- Thank you so much for this great information. I have a lot of lung problems but I don't usually have infections and have not had a sputum tests for anything. How are you feeling today?

Thank you for all the information for those of us who are new to MAC and (in my case) treatment. Just one question that concerns me after reading these posts - MAC is not curable?
Could someone clarify what that means? What does the extended period of taking medications do then?
Thanks,

This is a great question. And a confusing one. From what I understand MAC can be culture converted which means sputum shows no signs of infection...this is the goal of the antibiotics....but I’m hearing that MAC most often returns and requires retreatment...and since the antibiotic treatment period is normally 18 or more months longer...it seems incurable. The problem often is underlying Bronchiectasis, a breeding ground for MAC, which is a lifelong condition.

Thanks. I did a bit of reading and saw a few statistics, as reliable as statistics can be, that said that approximately 30% get it back again and those tend to be people who have bronchiecstatis and/or other lung conditions. I have bronchiecstasis so this could be me - very sobering thought.

It is a good thing that I'm learning about this gradually or it would be totally overwhelming.

I guess the best we can do is to do all we can to get through the medication period and build our immune systems, do what we can to keep our lungs healthy and improve overall state of health given that it is almost impossible to avoid sources of MAC in the environment. I always considered myself a healthy person so this changes my perception of healthy as well!

I couldn’t have said it any better. My feelings exactly and yes it’s a good thing Gradually learning about this disease.

Can Men get Breast Cancer ?

Yes, it is possible. I have a friend who was diagnosed and treated 35 years ago - he is thriving to this day, with no recurrence. You can jump over to this discussion - there are some men on Mayo Connect who have been diagnosed with breast cancer: https://connect.mayoclinic.org/discussion/mens-breast-cancer/?pg=1#comment-270082
Sue

Hello and welcome to the forum. Like many participants, you’re likely to learn things here that you won’t hear from your doctor; I certainly have. The volume of accumulated wisdom in the posts is impressive. Don (Thumperguy)

I agree that it is overwhelming to learn all about this disease at once, although useful if you have to make a decision about medication.

It’s kind of disheartening to hear that when we work so hard to clear our lungs and hope that they stay that way. I was on the “big 3” for 6 months, until I lost my hearing in one ear and that happened overnight, and my AFB score was 4+ despite taking the medications for that length of time. I’ve been using 7% saline in a nebulizer for about 18 months and my AFB score is “few” right now so lower than 1+ but not quite 0. My hope is also that I can get it to 0 and that it stays that way.
Hope springs eternal 🙂