Breast cancer survivor, now I have MAC and bronchiectasis

My CT showed no cancer spread but R upper and mid lobe bronchiectasis/fibrosis, treatment related — this is following 3 years of aggressive chemo and radiation following breast ca treatment. Anyone else experience this? Do I need to see a pulmonologist?

Hi @kee, and welcome. Great news on the all clear on breast cancer spread. Sorry to hear that you are now dealing with a new diagnosis of treatment-related bronchiectasis and lung fibrosis. You'll notice that I moved your message to this existing discussion. I did this so you can meet other breast cancer survivors who have experience with MAC and/or bronchiectasis like @pinkwarrior @jweisser @trixie1313 @src3acs @lnduh66 and @nick52.

Kee, you'll soon see that members in the MAC & Bronchiectasis forum highly recommend seeing a pulmonology specialist, preferrably one that has experience with MAC and bronchiectasis like the experts at NJH and Mayo Clinic.

Has a treatment plan been discussed with you yet?

@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.

I am not symptomatic but recently told that I have brochiectasis/fibrosis traction, treatment related after CT scan 2.5 years aggressive treatment for breast cancer. My primary care doc and oncologist both say I should be okay if not symptomatic. My questions, what symptoms do I need to watch for and what does M.A.C. stand for?

I am not symptomatic but recently told that I have brochiectasis/fibrosis traction, treatment related after CT scan 2.5 years aggressive treatment for breast cancer. My primary care doc and oncologist both say I should be okay if not symptomatic. My questions, what symptoms do I need to watch for and what does M.A.C. stand for?

@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.

Oh my stars! You are the 1st person I’ve found that had what I have. Pulmonary fibrosis from chest radiation. As a result I now have Traction Bronchiectasis. I don’t know what MAC is either. I don’t cough up sputum. I don’t hv chest congestion. If you do start to get congestion you need to get antibiotics to prevent it from turning into bronchitis or pneumonia. Also when traveling it’s good idea to hv a supply of antibiotics on hand so u can start until u are home to see your doc. If u cough up a bit of blood go to emergency room. This happened to me. I hv had my issue for 30 yrs and only happened once. Not trying to scare you. Talk about your doctor about this. It is not very common. Drink lots of water daily. I use Symbicort daily. 2 puffs morning, 2 puffs evenings. Hope this helps! Please keep in touch! Kathy

Hi Kee, welcome to the group - first of all, MAC is Mycobacterium Aviums Complex, a type of non-tubercular mycobacteria (NTM). It is a slow-growing bacteria that likes to colonize in warm, moist places. Most lungs are very good at ejecting mucus through the cough reflex, but those with bronchiectasis and/or fibrosis are damaged, and mucus tends to get "stuck" and provide a place for germs to grow. Mycobacteria and Pseudomonas are 2 of the most common.

The problem with waiting to be symptomatic is that an infection can sneak in and get a good head start before you will notice a problem. If you want to be proactive, you might want to find a pulmonologist experienced in the treatment of fibrosis &/bronchiectasis who can evaluate your CT, oxygen sats & spirometry (lung input & output.) Based on the findings, it may be recommended for you to do some airway clearance to keep most of the mucus out of your lungs. If that is recommended, you can come back here and talk about what/when/how.

Do you think you can ask one of your docs for referral to a pulmonologist?
Sue