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

That's good that the hole is relatively small and they caught it right away! I'm going to do whatever they say. I am very terrified though about having the cancer with this and then possibly having to have some chemo which is immune compromising and having this MAC!?! It's absolutely terrifying and then I was reading an MRI report about the mass on my intestine and it said basically that there was a possible spiculated subtle area of that tumor that was extending outside the intestine. That is terrifying. Because if that's true I would have to get chemo, I'm praying that it's possibly precancerous that's extending. Most of the biopsies that I had were precancerous cells on this tumor except there was some places that had the very aggressive cancer very tiny areas that were very suspicious on the biopsy. I just want to get this out of me! My surgery is supposed to be on saturday. I see infectious diseases on Tuesday, and I'm hoping they give the go ahead that I can still have it!!
I had a complete proctocolectomy. I have Lynch syndrome which caused colon cancer, my brother died at 32 he was a year and a half older than me when they found out I had it five years later they removed the whole colon, and they actually found Cancer all over in the inside of the colon that didn't break through the colon wall but they didn't see on the colonoscopy. So it was very odd. So now I am faced with this intestinal cancer that's aggressive plus this MAC!
Do you happen to know anyone or heard of anyone with a non lung cancer with mac? I tried to do a search on here but I can't find much of anybody. I'm sure there is cases of it.
You've given me such great information, I appreciate it so much! I feel pretty silly that I didn't know what O2 was now. Haha you sound like you're very active, and that's really great, I take care of my 5-year-old granddaughter as I told you before and she keeps me going and going! I really appreciate all your information!! The weather here has gotten much better. The snow is actually melting a little today. I'm so happy about that!!!
And I hope you have a great day. And any information or anything you think I should know, please send me an email. Thanks so much for all your help. And I still think it's so crazy that you had your colon partially removed, I never thought I'd meet anyone that had that. It's been 15 years and I haven't yet until now. Haha
Angela

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That's good that the hole is relatively small and they caught it right away! I'm going to do whatever they say. I am very terrified though about having the cancer with this and then possibly having to have some chemo which is immune compromising and having this MAC!?! It's absolutely terrifying and then I was reading an MRI report about the mass on my intestine and it said basically that there was a possible spiculated subtle area of that tumor that was extending outside the intestine. That is terrifying. Because if that's true I would have to get chemo, I'm praying that it's possibly precancerous that's extending. Most of the biopsies that I had were precancerous cells on this tumor except there was some places that had the very aggressive cancer very tiny areas that were very suspicious on the biopsy. I just want to get this out of me! My surgery is supposed to be on saturday. I see infectious diseases on Tuesday, and I'm hoping they give the go ahead that I can still have it!!
I had a complete proctocolectomy. I have Lynch syndrome which caused colon cancer, my brother died at 32 he was a year and a half older than me when they found out I had it five years later they removed the whole colon, and they actually found Cancer all over in the inside of the colon that didn't break through the colon wall but they didn't see on the colonoscopy. So it was very odd. So now I am faced with this intestinal cancer that's aggressive plus this MAC!
Do you happen to know anyone or heard of anyone with a non lung cancer with mac? I tried to do a search on here but I can't find much of anybody. I'm sure there is cases of it.
You've given me such great information, I appreciate it so much! I feel pretty silly that I didn't know what O2 was now. Haha you sound like you're very active, and that's really great, I take care of my 5-year-old granddaughter as I told you before and she keeps me going and going! I really appreciate all your information!! The weather here has gotten much better. The snow is actually melting a little today. I'm so happy about that!!!
And I hope you have a great day. And any information or anything you think I should know, please send me an email. Thanks so much for all your help. And I still think it's so crazy that you had your colon partially removed, I never thought I'd meet anyone that had that. It's been 15 years and I haven't yet until now. Haha
Angela

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Thank you so much for sending me this message! My surgery is scheduled for this next Saturday March 4th! I'm the only surgery for my doctor that day, and it's really early in the morning. 7:00 am!) I see infectious diseases tomorrow to find out what the game plan is and so they can clear me for surgery. I'm not really having symptoms right now of the Mac though so I think now is the time to get this aggressive cancer out of me. I can't imagine they would cancel this! I will definitely give an update when I had the surgery!! Thank you so much for your concern, it is so nice that people on here really care about each other. And I hope to help others with this or that are facing a co-diseases at some point. I have learned so much and still have so much to go. Have a wonderful day!
Angela

Thanks & Good news - and don’t worry about the MAC — many people have had surgery with MAC. Also, I’ve had three friends over the years who’ve had colon or intestinal cancer and they are all thriving. One even had a huge section of her intestines taken out, and she is doing great!

Since you mentioned you are not good with websites, you may not have noticed that there is a colorectal cancer group
here at Mayo Connect
https://connect.mayoclinic.org/group/colorectal-cancer/

Having lived with a great deal of health-related terror (in addition to NTM), I honestly can feel your fear. It's overwhelming, isn't it? You've been through so much already...facing this surgery must be both terrifying and a relief. When I was decided to go through with my colon surgery, I sobbed so hysterically as they wheeled me in to prep me that the doctor almost decided not to do it. Unless one has lived with this kind of fear, one cannot truly understand the body quakes that shake you from the inside out. But as you've said, removing this cancer will be the best thing for your body. I pray that it has not invaded any other area and that chemo will not be necessary.

On a positive note, I know many NTM/MAC patients that do not have lung cancer...me included. I have bronchiectasis, a cavity, the very unwelcome pseudomonas, and have had several strains of mycobacterium, but I've never been diagnosed with lung cancer. I don't think it's a given, but someone else in the group may know far more about this than I do.

Please let us know when your surgery is scheduled to move forward so we can lift you up as you go through it. This group has been very helpful to me just reading what others post. Often times questions are answered that I didn't even know to ask...and I've had NTM for almost 13 years and have asked A LOT of questions. Mostly what I need though is knowing that I am not alone, that there are others out there who don't know me but care about me anyway, and that no one in this group has ever made me feel ashamed, less than, or stupid for anything I've ever asked or said.
Big Hug & Many Prayers,
Busy

Busy,
I hope you're doing good! Things have been so crazy here but I've been meaning to send you a message. I saw infectious diseases today. He looked at the CT scan and said that even though there's a 3.2 CM hole in my long, he said the infection was mild. That seems crazy to me! But of course since there's a cavity, I have to be on the big three now. I can go pick them up today, I'm going to start one every five days. He didn't cancel my surgery so that's still scheduled for Saturday. He said he would come and see me in the hospital because I'll be in there a few days. I'm not sure if this is normal or not, but he wants me to see an immunologist because he's curious as to why I would have gotten this. He doesn't think that being immune compromised from the cancer would have caused me to have contracted this? But it seems like there's a lot of people on this site that aren't immune compromised to have this. I mean I don't have a colon, I've had this cancer in my intestine for who knows how long.. I also do a lot of planting in the summer, I'm always digging around in the dirt. The last three Summers have been like this. He looked at a CT scan from 2011 because that's the last time I had one, and there was actually little nodules in that area that the mass formed and he was a little suspicious that I could have had this way back then but wasn't sure. He said I've at least had it a few years. Scary!
You said above that you've been diagnosed with several strains of Mycobacterium..what?! Why is that? I feel that I'm going to get all sorts of crazy things going on in my lungs until this goes away, if it ever goes away? He said I have a good chance on it going away because it's mild and of my age. I hope he's right. This is very rattling. I know what you mean about living with your share of TERROR! I love the way you put that actually because it's so true. It's like living on the edge of your seat wondering what's next?! When I decided that I would go through with the colon surgery, I didn't have any thought about not doing it. I saw my brother die of colon cancer and I just wanted that colon out of me. So it was a completely different set of circumstances. But, it's like losing a huge part of your body and even though it's your colon it's still something's being taken from you and some people feel less than themselves when that happens.
Anyway I wanted to let you know I saw ID today, he said that I'll start one antibiotic at a time so I'm hoping I don't get sick from any of these. I really hope I just adjust. He said I have to see an eye doctor, just to make sure nothing weird goes on with the eyes and ear doctor because of the medication with the ears. I mean that's scary.! I hope you don't know anyone that went blind or deaf I need some meds!
Hope to hear from you soon! 🙏😀❤️💖
Angela

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.

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

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