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Need Surgery on Cancer & Just Found Out I Have MAC! Help!
MAC & Bronchiectasis | Last Active: Mar 21, 2023 | Replies (33)Comment receiving replies
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.
Replies to "Hello bellsina71, I agree with nana43 and tconz...breathe! It is so easy to fall off the..."
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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@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