← Return to Need Surgery on Cancer & Just Found Out I Have MAC! Help!

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@tconz

bellsina71, I too was very frightened when I got my diagnosis in November. My first step was to start educating myself and joining some support groups like this one (Mayo) along with Lung Matters and NTM info and Research. All the precautions and change of lifestyle will seem overwhelming at first but it is necessary to keep your lungs as clean as possible. Remember almost everyone in these support groups is just like you and will give you encouragement.
My Pulmonologist referred me to an Infectious Disease Doctor and from there I started taking the Big 3 (antibiotic treatment) not sure if they will put you on that or not right now. Make sure you feel comfortable with your Doctors because that is very important. We are all in this with you so please reach out anytime.

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Replies to "bellsina71, I too was very frightened when I got my diagnosis in November. My first step..."

Thank you so much for responding to my comment! This is a very terrifying time for me. Not only doing with a cancer, and an aggressive cancer at that but then to find out I have this and today to find out I have a 3.2 CM cavity in my lung, with multiple new nodules found in the middle of my lung and the bottom. I didn't even know nodules could form this quickly?! I just had a CT scan done in January and the only nodules were around the mass that is now a hole in my lung, and the rest of the lung field was clear. What sort of lifestyle changes do people with this have to make? Can you give me some examples of things that you do to keep your lungs clean and clear?! I'm sure that's going to be very hard for me. Especially since I've owned a cleaning business for the last few years, but I don't think I'll be able to do that anymore. I will say that I don't have a lot of symptoms of this yet. I am short on brought sometimes, even with that hole in my lung you would think I'd be coughing because it's up high, in my right upper lobe. When I initially had the CT scan done in january, January 5th they asked if I was coughing all the time and I told them no. And I never really did cough except for when the pneumonia got pretty bad. And then I did call for about 3 weeks and once I got on the antibiotics it went away. But I haven't lost any weight or have sweats at night, I don't cough stuff up or spit stuff up generally, and no coughing yet. I really hope it stays this way, I don't know if some people stay asymptomatic but it would be nice! Again thank you so much for responding and if you can give me any advice or tell me about your lifestyle changes, or if you know anything about the cavities in the lung and what they do about those. It's really scary to me. But I'm so glad that there's so many supportive people on here and to read the stories and know that people do live with this and live fulfilling lives makes me feel great! Angela