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