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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
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
Replies to "@busybeans Thank you so much for your words of encouragement. I wanted to tell you that..."
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Your plate is surely too full! I trust that your ID doctor will make the best decision about moving forward with the surgery. And no, my guess is that he/she won't start you on the big 3 until afterward. I, too, had almost no symptoms for many years, and even with the ones I have now (occasionally short of breath, a little more fatigued, still a non-productive cougher, a little more weight loss, AND a cavity in my left lung), I manage to live a fairly normal life (well, until the pandemic hit and I felt - and was advised by my doc at NJH that I needed to isolate as much as possible). Sometimes cavities less than 4 cm will heal on their own (or so I've read). Mine has not. Sometimes robotic surgery is done to remove that portion of the lung. But there are risks with that - none that I am willing to take at the present time. I am not on O2 and have never been. The surgery might mean that I would need to be. I remain active and don't want to lose the muscle tone I have or any more weight, so for me, at this moment, I have opted to live with the cavity and "wait and see" what the next CT shows in 3 months. All of my doctors (at NJH, and locally my pulmonologist and ID) have been willing to work with me and listen to what I want instead of following the protocol (even though one of my doctors developed it). I have learned that while I must be my own advocate. I also must be gentle with myself and know that whatever the situation is, it will be "blessed" or "blocked" as it should be. I do hope this is helpful, and I've added you to my prayer list.