Newly Diagnosed Questions

what does a cat scan of your lungs show??? Bronchiectasis???
6 years ago NJH told me the gold standard to begin RX for MAC was two positive cultures and presence of bronchiectasis on CAT scan.

I'm a little confused, was the MAC seen on a CT scan or diagnosed with a sputum culture? If it was diagnosed by CT only, more exploration will be needed to confirm the type and severity. I would guess that any MAC treatment will be deferred while your pneumonia and cancer are treated.
But don't let that frighten you, it is a very slow-growing infection, and it is often handled with a wait and see approach.
Sue

Hi everyone,
What a resourceful group we have here. Can someone explain what it means when the lungs have nodules? I heard that in China a lot of people have nodules in their lungs, but it doesn't seem to be a problem. Are there different nodules?

Thanks in advance!
ling

@sueinmn
Thank you so much for responding to me! I think you're the only person that has and I'm so scared! So it wasn't just a CT scan, they did a bronchoscopy about 3 weeks ago, and they found the Klebsiella pneumonia a few days after, and then about a week ago they called and told me that they thought I had TB because of the petri dish culture, but I tested negative for that via a blood test, so then a couple days later they realized it was Mac that I had. I have an appointment with infectious diseases on Tuesday at 10:00. The results of that pending CT scan are back today, and it's showing a cavity 3.2 CM by 2.1 cm. So scary! I have read about cavities and I haven't seen any that are that big? Do you know what they do for those if anything? Also the CT report stated that around that mass, which is the cavity now, there had been a lot of smaller nodules on the last CT scan in January, and it said that those nodules have dissipated a little bit but I have a bunch of new ones in the middle of my lung and on the bottom of the lung. I'm not sure if that's a common symptom of MAC?! But I know nodules don't develop that quickly. I was wondering if they were maybe scars from the pneumonia. Or if this is just a symptom of this mac. I will add that I don't really have any symptoms of this. I am short on breath sometimes. But none of the other symptoms that are listed, I sleep with a heating blanket because I'm cold. Haha, I eat all the time. I'm always hungry, I don't have night sweats or losing weight, I'm not coughing, or spitting up stuff since I've been on the antibiotic for the pneumonia. I think it's just really strange. I only found out I had this Mass because in January I woke up at night wheezing and I started coughing up some blood. I went to the ER, they did a CT scan, found that mass and thought it was cancer!! And of course they would think that. And then you know it was the process of the CT scans, the broncoscopy, the biopsies, and now this is where I am at. I do agree with you that they're probably not going to start treatment until after my surgery. My pulmonologist told me tonight that he believes I should still have the surgery but it'll be up to infectious disease on Tuesday to make the final decision. This is an aggressive cancer and my doctor said that part of the reason that I probably got the Mac is because of my immune system being so compromised, so I'm hoping that they just move forward with the surgery on March 4th.. again, I really appreciate you sending me a message and if you could give me any other information from what I've told you. I've read a lot of your posts and you seem very knowledgeable about this. Any help you could give me I really and truly appreciate! This is really scary for me. I'm 52 and I take care of my five-year-old granddaughter full time. I just can't imagine anything happening to me and I feel like the world is coming down!! Thank You!
Angela (Wisconsin)

They can be many things, scar tissue from infections, they can be cancerous nodules or non-cancerous nodules. I believe they classify anything under 3 cm as a nodule. Anything over 3 centimeters is a mass. I could be wrong about the dimensions but that's what I remember reading.. almost everyone has some sort of nodules in their lungs, generally they're harmless. Usually from infections or living in cold climates. There's probably some people on here that know far more about them, but I hope that helps a little!

Angela - The double diagnosis of MAC and cancer must be really scary. The one bright spot - MAC is a slow-growing bacteria, so it is safe to wait to treat until after the cancer is managed.
I'm not a doc so can't tell you whether the nodules are from pneumonia or MAC, that is a question for your ID doc.
Good luck with your appointment- will you let me know what the doc advises?
Deep breath! Enjoy your granddaughter and just know we are all here to "hold your hand" virtually.
Sue

Being as active as you are, it sounds like you are probably asymptomatic of MAC symptoms, especially if you are so active and briskly walk 15 miles a week. I’m not that active but was also asymptomatic when diagnosed a year and a half ago. My pulmonologist pushed for me to start treatment but I declined.
As others on this forum say, the most important thing for you to do is airway clearance-Nebulize with 7% saline and use an Aerobika to keep the mucus cleared out of your lungs. The saline also may keep the MAC tapped down. See how you feel in a few months and then decide if you want to start treatment or wait longer.

I just found out that I have mac, and I also got diagnosed with Klebsiella pneumonia at the same time, along with an intestinal cancer about 3 weeks ago. I'm not sure how long I've had the Mac for, I'm a little terrified but I wanted to tell you that I really don't have many symptoms, I'm having a little bit no problems taking deep breaths sometimes, but I also have pneumonia in there so I don't know what to think. A CT scan was done on Friday, the results aren't back yet but my doctor put in the notes on my chart tonight that the preliminary on the CT was a cavity in my lung. I'm not really sure what that means, but everything that I looked up about it it isn't good... I'm really scared about this. I don't have any other symptoms though, no coughing, no mucus even. It's just so strange. Is there anything you can tell me or advice you could give? I'm terrified!!!(

@sueinmn
Thank you so much for responding to me! I think you're the only person that has and I'm so scared! So it wasn't just a CT scan, they did a bronchoscopy about 3 weeks ago, and they found the Klebsiella pneumonia a few days after, and then about a week ago they called and told me that they thought I had TB because of the petri dish culture, but I tested negative for that via a blood test, so then a couple days later they realized it was Mac that I had. I have an appointment with infectious diseases on Tuesday at 10:00. The results of that pending CT scan are back today, and it's showing a cavity 3.2 CM by 2.1 cm. So scary! I have read about cavities and I haven't seen any that are that big? Do you know what they do for those if anything? Also the CT report stated that around that mass, which is the cavity now, there had been a lot of smaller nodules on the last CT scan in January, and it said that those nodules have dissipated a little bit but I have a bunch of new ones in the middle of my lung and on the bottom of the lung. I'm not sure if that's a common symptom of MAC?! But I know nodules don't develop that quickly. I was wondering if they were maybe scars from the pneumonia. Or if this is just a symptom of this mac. I will add that I don't really have any symptoms of this. I am short on breath sometimes. But none of the other symptoms that are listed, I sleep with a heating blanket because I'm cold. Haha, I eat all the time. I'm always hungry, I don't have night sweats or losing weight, I'm not coughing, or spitting up stuff since I've been on the antibiotic for the pneumonia. I think it's just really strange. I only found out I had this Mass because in January I woke up at night wheezing and I started coughing up some blood. I went to the ER, they did a CT scan, found that mass and thought it was cancer!! And of course they would think that. And then you know it was the process of the CT scans, the broncoscopy, the biopsies, and now this is where I am at. I do agree with you that they're probably not going to start treatment until after my surgery. My pulmonologist told me tonight that he believes I should still have the surgery but it'll be up to infectious disease on Tuesday to make the final decision. This is an aggressive cancer and my doctor said that part of the reason that I probably got the Mac is because of my immune system being so compromised, so I'm hoping that they just move forward with the surgery on March 4th.. again, I really appreciate you sending me a message and if you could give me any other information from what I've told you. I've read a lot of your posts and you seem very knowledgeable about this. Any help you could give me I really and truly appreciate! This is really scary for me. I'm 52 and I take care of my five-year-old granddaughter full time. I just can't imagine anything happening to me and I feel like the world is coming down!! Thank You!
Angela (Wisconsin)