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Posted by pinkwarrior @pinkwarrior, Tue, Apr 2 5:24pm

Myy name is pink warrior, as I am a 5 year breast cancer survivor. They have been scanning my lungs for two years because of nodules and just confirmed MAC and I think he mentioned bronchiectasis. My pulmonologist does not tell me much. I have not started treatment yet. I did well through chemo, radiation and reconstruction and had hoped to have a rest from the whole ordeal. Now I am finding out MAC is not curable and I will be dealing with it for a long time. Feeling very frustrated and sad. I hope your blog will help me as did so many of the breast cancer blogs. Thank you.

@pinkwarrior Hi Pink, welcome. I'm so sorry you have already been through so much and now you're looking at another challenge, more medicine. However, you have come to the right place. There's a lot of information and a lot of hope here. People more knowledgeable than I will give you advice about how to navigate this site to find the information you're looking for. My advice (having dealt with a bronchiectasis diagnosis since 1997 and MAC diagnosis since 2008) is make sure your doctor is experienced when it comes to these specific conditions. Some pulmonologists don't know much about either condition. It all depends on how advanced the bronchiectasis is and whether the MAC is simply present or doing damage. National Jewish Health in Denver and Mayo Clinic are the places that offer the best resources related to bronchiectasis and MAC. But there are many excellent providers throughout the country. I would say, chin up. This is not the end. There is help for you. Be willing to find the best care and be your own advocate. Eat well, rest, exercise, practice good lung hygiene and you can maintain a good quality of life despite these conditions.

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@onana

@pinkwarrior Hi Pink, welcome. I'm so sorry you have already been through so much and now you're looking at another challenge, more medicine. However, you have come to the right place. There's a lot of information and a lot of hope here. People more knowledgeable than I will give you advice about how to navigate this site to find the information you're looking for. My advice (having dealt with a bronchiectasis diagnosis since 1997 and MAC diagnosis since 2008) is make sure your doctor is experienced when it comes to these specific conditions. Some pulmonologists don't know much about either condition. It all depends on how advanced the bronchiectasis is and whether the MAC is simply present or doing damage. National Jewish Health in Denver and Mayo Clinic are the places that offer the best resources related to bronchiectasis and MAC. But there are many excellent providers throughout the country. I would say, chin up. This is not the end. There is help for you. Be willing to find the best care and be your own advocate. Eat well, rest, exercise, practice good lung hygiene and you can maintain a good quality of life despite these conditions.

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Thanks for the encouragement. I really got help from the breast cancer blogs I joined. My oncologist sent me to the pulmonologist when my CT scan didn’t clear up. It kept showing small noodles. The pulmonologist suspected MAC but waited to rescan me. I finally had a bronchoscope and the culture grew MAC in 8 weeks. It said +1. I have no idea if that’s good or bad. I have a follow-up in a month. I am also supposed to see ID doctor. From reading the posts, they are the doctors who push for the antibiotics. Can you stop and start these 3 drugs everyone mentions or are there no breaks in the routine once you get started?

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@pinkwarrior– Welcome to Mayo Connect. Have you had a biopsy performed to see what the nodules are? ID doctors specialize in infectious diseases. How long have you been having problems?
If you are having problems getting around Connect this might help https://connect.mayoclinic.org/get-started-on-connect/

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I had a bronchoscope which tested positive for MAC. He was pretty sure that's what I had without the scope but wanted to confirm.

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@pinkwarrior Hi, and welcome to our site. Are you having any symptoms from your mac?

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@windwalker

@pinkwarrior Hi, and welcome to our site. Are you having any symptoms from your mac?

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I am not having any symptoms. I walk 3 miles about 4 times a week. I know this is a life long disease.

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@pinkwarrior

I had a bronchoscope which tested positive for MAC. He was pretty sure that's what I had without the scope but wanted to confirm.

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Hi pink – Any other symptoms? Like cough, with or without sputum, chest pain, fatigue, fever, shortness of breath, weight loss… Absent any other symptoms, my pulmonologist chooses to wait and watch (closely), but with symptoms he treats.
MAC grows slowly, so he said the downside of waiting and watching is minimal. In my case, I had multiple symptoms, as well as evidence of expanding nodules, so we are treating.
Although this reatment regimen is not pleasant, I have to admit I feel better, and just survived a major cold with lung involvement without requiring additional antibiotics or hospitalization – just additional rest and nebuliser treatments – something that I have not been able to manage for several years.
The +1, +2, etc diagnosis has been used in wound care and TB testing to quantify the amount of bacteria detected. In past, it was used to determine whether or not to treat, but now doctors tend to treat if there is evidence of infection and symptoms…
I will reiterate what others have said – make sure your lung doc is experienced with bronchiectasis, and if not, find someone who is.

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@sueinmn

Hi pink – Any other symptoms? Like cough, with or without sputum, chest pain, fatigue, fever, shortness of breath, weight loss… Absent any other symptoms, my pulmonologist chooses to wait and watch (closely), but with symptoms he treats.
MAC grows slowly, so he said the downside of waiting and watching is minimal. In my case, I had multiple symptoms, as well as evidence of expanding nodules, so we are treating.
Although this reatment regimen is not pleasant, I have to admit I feel better, and just survived a major cold with lung involvement without requiring additional antibiotics or hospitalization – just additional rest and nebuliser treatments – something that I have not been able to manage for several years.
The +1, +2, etc diagnosis has been used in wound care and TB testing to quantify the amount of bacteria detected. In past, it was used to determine whether or not to treat, but now doctors tend to treat if there is evidence of infection and symptoms…
I will reiterate what others have said – make sure your lung doc is experienced with bronchiectasis, and if not, find someone who is.

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Thanks so much for the information. I am slowly learning.

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@sueinmn

Hi pink – Any other symptoms? Like cough, with or without sputum, chest pain, fatigue, fever, shortness of breath, weight loss… Absent any other symptoms, my pulmonologist chooses to wait and watch (closely), but with symptoms he treats.
MAC grows slowly, so he said the downside of waiting and watching is minimal. In my case, I had multiple symptoms, as well as evidence of expanding nodules, so we are treating.
Although this reatment regimen is not pleasant, I have to admit I feel better, and just survived a major cold with lung involvement without requiring additional antibiotics or hospitalization – just additional rest and nebuliser treatments – something that I have not been able to manage for several years.
The +1, +2, etc diagnosis has been used in wound care and TB testing to quantify the amount of bacteria detected. In past, it was used to determine whether or not to treat, but now doctors tend to treat if there is evidence of infection and symptoms…
I will reiterate what others have said – make sure your lung doc is experienced with bronchiectasis, and if not, find someone who is.

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@sueinmn– Good morning. It sounds like you have struggled through a tough time, but came out on top with your cold. Would you kindly explain +1, +2 mean?
My Pulmonologist is new but considered the best in the state. My other one retired. I've had one appointment and love the set up that they have.

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Writing to welcome you and send positive energy your way. You must be a very strong person now, having braved your way through breast cancer, and now facing MAC. You will find a lot of help on this site and learn that the disease is controllable – especially if you attack it early. It is recommended you see the local Infectious Disease doctors and get on a plan of antibiotics. Of course, a bronchoscopy will reveal the exact strain of bacteria, if you haven't had that done yet.

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@merpreb

@sueinmn– Good morning. It sounds like you have struggled through a tough time, but came out on top with your cold. Would you kindly explain +1, +2 mean?
My Pulmonologist is new but considered the best in the state. My other one retired. I've had one appointment and love the set up that they have.

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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.

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@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?

Liked by Dee

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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,

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@kathyhg

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,

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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.

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@hydrang3a

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.

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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!

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