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

Posted by bellsina71 @bellsina71, Feb 20, 2023

I was diagnosed with an aggressive cancer on my intestine, they believe they got it early because the cultures are showing mostly precancerous cells with some very suspicious probably cancer cells mixed in. The thing is is that I just found out tonight from my doctor that I have MAC. They did a bronchoscopy about 3 weeks ago, I went to the emergency room because I coughed up some blood, but it never happened again. I also don't have any coughing or anything like that. But I also had Klebsiella Pneumoniae which I've been on antibiotics for, and they found this during the biopsy as well. Friday I had another CT scan and tonight when the doctor called me he put notes in, that the CT wasn't back yet but that preliminary findings are showing that I had a cavity in my lung. I am so scared right now. Can anyone give me any encouragement or make me feel better about this? I was so happy to find out that I don't have cancer, but I'm scared that this isn't even any better? I don't even know where I got this from. I just think my immune system was so compromised and I was anemic for so long from the cancer.. I'm really scared... I have to see somebody for the center for disease control.. that's my next step. Words of encouragement, help, or advice would be appreciated.

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@bellsina71

Hi Busy! How are you doing!? I hope all is well ♥️ I had surgery last Thursday I've been in the hospital ever since. It was supposed to be on Saturday, but they moved it up a couple days. I found out the pathology yesterday and they got all the cancer out, along with 17 lymph nodes which were all negative for cancer. My surgeon did say I may need to get chemotherapy only because of how big the tumor was, 5.2 cm and because that it was called differentiated and the pathology and that just means I guess that it was more aggressive than most cancers so it would be precautionary if I had to have chemo and I'm hoping it would not be that much!
While I was in the hospital they scheduled me for a CT guided lung biopsy, I wasn't really sure why and I didn't feel like I was getting a good answer either. My ID doctor just said he wanted to make sure nothing else was going on because I shouldn't have gotten this because of my age and that I don't have a lot of symptoms and should have relatively healthy lungs. I think they wanted to look for cancer. I went down there for them to do it and I started to panic because I realized I wasn't being put to sleep for that! Anyway they did the first set of CT images in the doctor told me that I didn't have to have it because everything was improving so much, and he said the walls around my cavity had thinned out so much. Do you know what that means? I guess my doctors wanted him to take a biopsy from the thick wall of the cavity. And he said cancer doesn't thin out or shrink like that. I'm not sure if you know anything about that?
I'm hoping to go home tomorrow! If not it'll be thursday. I'm still in a lot of pain but they took the epidural out today, and they had put it in the wrong spot anyway so it was numbing my legs and not my abdomen so they had to turn off the numbing medication like a day and a half after my surgery when my legs were completely numb! I was on a morphine drip for days though so they removed that today. I never thought morphine worked very good on me though.
Anyway, let me know how you're doing and if you have any thoughts on the biopsy and the clearing of that or the walls of the cavity? Are the walls of this cavity supposed to be thinner?
Thanks for any of your knowledge or resources you can offer. I really appreciate it!!
Angela

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Angela — it’s so great they caught that agressive cancer when they did!!
You must be so relieved it’s out of you now.
I hope you made it home today — always easier to sleep and heal up in your own bed and home.
Warm healing hugs to you,
Cate

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@busybeans

Wow, Angela! This is really good news - and answered prayers. I hope that if you have to have chemo it's only for a limited time. But it really does sound like you got a great report. Although I'm sorry to hear that the epidural wasn't totally effective. I hate morphine...it only makes me stupid!
As far as the lung cavity, from what I understand, many do clear on their on. So I would think, and someone else might know more about this than me, that the thinning walls means that the cavity is healing itself. I sure hope so.
I'm a little confused as to why your doctor suggested that your age affects whether or not you get NTM. I know younger folks (in their 30s) who have it. I was 57 when diagnosed. I know a lady who wasn't diagnosed until 85. My research suggests that one contracts it through a combination of things; exposure to water, soil, air; genetic predisposition; immunocompromised and/or some other serious health condition; thin, Caucasian... My doctor at NJH says that more and more folks are being diagnosed with it as physicians become more aware of this lung disease and radiologists are better trained to read CT scans.
A few things I've been told to do/not to do: Run the fan in the bathroom when taking as short a shower as possible (no baths) (I have a rainhead shower to minimize the mist which is not good to breathe); stay out of hot tubs and swimming pools; always wear a mask when gardening; ask your friends/family to let you know if they are sick with a cold so you can either mask around them or stay away (colds/bronchitis are obviously not good for us).
We were going to replace the water lines into our house since mycobacterium is a naturally occurring bacteria found in water and normally not dangerous bacteria that clings to the lining of the water pipes - including from its source - it wouldn't do any good to go that major expense. In short, unless I wanted to replace the pipes from the Colorado River to my house in southern AZ replacing the lines from the street to my house wouldn't serve any purpose.
I hope you are beginning to rest more comfortably and I pray for a speedy recovery. Keep me posted!! All my best, Busy

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Busy,

I am home now recovering!! It's so great to be home and back with my granddaughter who I have guardianship of, she's five. I love her so much!!

You gave me a lot of great tips about the mac, especially wearing a mask when gardening. I do a lot of that!
My ID doctor wants me to see an immunologist. He said that people usually don't get this that have healthy immune systems, he told me that generally my lungs seem to be healthy so what's the underlying cause and reason that I would have gotten this? Do you know how many people who don't have an underlying condition? Or compromised immune system? He doesn't seem to think that it would be because I had cancer and didn't know it. But I do. I am a little bit concerned as to why I would have gotten this MAC also. I had a CT scan back in 2011 and he looked at that and there was some little nodules right where that bigger Mass/ cavity formed now, so he even thought that it was possible that was the beginning of it way back then!?!. But he doesn't know for sure but thinks I've had it for at least some years. It's really scary that you can have something like this and not even know it it's so silent.Either way it's something I have to live with now.

I'm on two of the antibiotics so far; azithromycin and ethrombuterol. The next one he's putting me on is going to be an inhaler. He's not putting me on that third antibiotic, I don't know why? There is so much information out there and some of it contradicts each other it's really confusing. And some of it applies if you have a certain kind of mac and not another. So it really gets dicey! I appreciate all your advice, you seem to be very knowledgeable about it. As always I appreciate everything that you tell me!)
I hope you're doing good and are having a nice weekend!! Hope to hear from you soon.

Angela

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Hello Angela,
I've been keeping you in my prayers and hope your recovery from surgery is going well and that you are being gentle with yourself.
I think the choice of antibiotics and/or inhaled meds depends on the strain of NTM. When you're sputum is tested, they are able to determine which antibiotics will work best. For most, it's the standard three. But for some folks it's different...and it can change over time. Do you know what strain(s) you have? The last time my sputum was checked I had only kansasii. I'll be seeing my local pulmonologist soon and learn whether anything new has developed with the sample I provided in January. Kansasii is a slow-growing strain. I'm hoping nothing new has settled in.
I've done a lot of research since I was diagnosed in 2010. No one in the southwestern town I live in knew much about mycobacterium. The emphasis in my neck of the woods is Valley Fever. So I set about educating myself, and learned early on that National Jewish in Denver was where I needed to go based on my location and their vast knowledge of this rare disease.
I don't know exactly why I got it. But I think it was due to severe anemia (requiring transfusions) over a 2 year period due to my botched colon removal. Since mycobacterium is everywhere - air, water, and soil - I didn't question the why too much. I just moved on to how I could live with it since I couldn't tolerate the side effects of the meds (tried twice and failed). Thirteen years later, I am still upright, still walking 3+ miles a day, still playing Frisbee with the dog, but very aware that I am a vulnerable person and very careful about the environments in which I place myself. Even before the pandemic, I was careful. My kind friends would advise me if they had the sniffles or thought they might have some bad bug that would impact me. To this day, they remain supportive and understanding.
I have moved as best I can into acceptance that this is mine to deal with. And I'm thankful everyday that it's not become debilitating - and may never. I still don't like doing the daily breathing treatments and wish like heck I didn't have it. But I will not be defined by it, nor will you. We are many other wonderful things...we just happen to have NTM.
Hang in there. And know that you are remembered in prayer each and every day.
Busy

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