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

Hi bellsina71 ,
Stop, Take a Deep breath….
MANY have this and you have found a great support group right here! Also, know that this is NOT a death sentence- many of the people you will talk with on this forum have had this disease for decades. It is a chronic condition however and categorized as rare, so that does make it a challenge. The best advice I can give you is to do your homework and find out as much as you can about the type of NTM you have. You must step up and be your own health advocate; get educated😀 This forum is a great help and resource! Also,
NTM info.org has tons of info and webinars.
Lastly, here is the hope…..,
I have MAC and Bronchiectasis and after 6 months of treatment, my last bronchoscopy showed NO MAC. That’s called Culture conversion and the first step to remission!! Please don’t let the negative overwhelm you. You will have to make some lifestyle changes most probably but you have already faced Cancer. YOU GOT THIS!!
All the Best,
Dee

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.

Hello bellsina71, I agree with nana43 and tconz...breathe! It is so easy to fall off the cliff when we're frightened and don't know where to turn. But this group...these folks have walked many of the same steps you have. I've had my entire colon removed, and thankfully avoided a colostomy. But in the process a staple wasn't attached properly and I bled for two years resulting in severe anemia which ultimately led to my immune system becoming so weakened I became susceptible to NTM. That was 12 years ago. I'm 70 now, failed the big three twice, and yet have managed, with a few hiccups here and there, to live pretty normally. I do (and hate) my breathing treatments five days a week. I'm a nonproductive cougher so really all it does is give me a screaming sore throat. But I've been told I must do it so I do. I also fast walk 3 miles everyday and try to stay as active as I can. But having said all of that and sounding like I have it all figured out, I don't. Some days I am overwhelmed with fear. Some days I feel too darn tired to move from my desk chair. Some days I feel really sorry for myself. But most days, I know that if I dig deep enough I can find the courage to face this disease one more day. So I come to this website and see if there's anything I think might be remotely helpful to say, or even to share my despair. Someone here always lifts me up. All of us will lift you up as best we can...and I will say a prayer for you; I hope you don't mind.

@busybeans

Thank you so much for your words of encouragement. I wanted to tell you that I was surprised to read you had your colon removed, because so did I and I also managed not to have a colostomy bag. I have a rare genetic disorder called Lynch syndrome. It's part of the cancer I have now on my intestine. I want to hang on to as much as that as possible because as you know that's all we have left. It sounds terrible that you were bleeding like that though! I know what you mean about those Staples because I remember that and waiting for all that to heal for 3 or 4 months.. I also became extremely anemic with this other cancer and that's how my lung doctor believes I acquired the Mac. I am not sure how long I was so anemic for. But by the time they found out they had to actually give me IV infusions of iron for almost 3 weeks. A normal number for iron is 50 to 170, mine was at 12. I had a CT scan done on Friday and it came back today and there is a cavity in my lawn, 3.2 CM by 2.1 cm. It's just unbelievable. I've heard of cavities before have to reading a lot on the site, but I don't think I've seen or read of any that are that big. What do they do about those? Do you know? I have an appointment on Tuesday with my infectious disease doctor. I'm hoping that they're going to go through with the surgery for the cancer since this is an aggressive cancer. So I'm hoping that infectious disease agrees. I wanted to let you know too that I don't have any symptoms of this Mac yet. I'm not sure why, I'm a little short on breath but I don't cough or have night sweats or I'm coughing anything up, I haven't lost any weight. So I'm finding all that strange. I'm not really sure about what all the lifestyle changes I'm going to have to make are. But I'm willing to do whatever it takes to try to get rid of this! I'm sure they're going to start me on the big three, probably waiting till after the surgery though. Again thank you so much for your kind words and by all means send me a prayer. The power of prayer works!
Angela

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

Thank you Dee!!
I will look up about the NTMs, and I'm not sure what I have yet. I see infectious diseases on Tuesday. But I have a cavity in my lung that's 3.2 CM by I don't think I've seen anyone on here with that big of a cavity yet. I'm grateful I don't have symptoms yet except for I am short on broth sometimes, then there's other times I feel like I can breathe good. But no coughing or night sweats are losing weight, or fatigue. I actually feel pretty good. I'm hoping that they can get treatment started as soon as my surgery is over on the 4th. I will definitely go to that website, I'm trying to get as much info as I can. Thank you for all your kind words and I appreciate that you took the time to write to me. Thank you so much! Angela

Hi Angela!
Do you mind me asking where you are located?
I ask for 2 reasons…
National Jewish Health is the Gold Star for lung issues. They are located in Denver, Colorado. They specialize in NTM& Bronchiectasis and tons of people will recommend them to you. They are thorough and comprehensive in their care because it’s ALL they do.
Secondly, I am part of an another support group that meets via Zoom. They set them up geographically, I think. I could check and see if there is one in your area.
Dee

Dee,
I am located in Wisconsin. Milwaukee area. Right now I am with aurora, I've been with them for everything for so long. I was actually thinking about switching to froedtert medical college but I am in the weeds right now so it's really hard to switch when I'm having a surgery and I just found out I have mac, and don't even know what kind. I did watch some videos though a couple of them on this website you recommended. They were really good, I'm going to watch more! I really appreciate you giving me that information. I could understand what these doctors were talking about too. Which is great! So I really appreciate it yes if you could check to see if there's any support zoom groups in my area it would be very good to know. Thanks for all of your help, it's so appreciated!

Congratulations on no MAC anymore. Could you please tell me what times you took each of the 3 medications? 2 doctors and 1 pharmacist told me 3 different things!

Hi!
I take the Big 3 all at night b4 bed thrice a week,
Monday, Wednesday, Friday.
I found this routine kept side effects to a more tolerable level. I take all other meds in am plus probiotic daily. Hope that helps!
Dee