Post surgery for typical carcinoid: Very tired and low energy

Posted by jessie1990 @jessie1990, Feb 26 2:33am

Hi everyone I'm 11 weeks post op for typical carcinoid ive had 2 lobes removed I'm tumor was fully removed all nodes clear but experiencing tiredness last 3 weeks but my b12 is low and my folic acid will this be the cause of my tiredness and low energy

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Profile picture for ggiinnaa @ggiinnaa

No idea. It’s been 3 years since two of my lines were removed for typical carcinoid tumors. I still have some but I am now on Ct scan schedule of once a year. I am leading a normal life but
huff and puff some after climbing stairs
Wishing you hugs and
luck in this process

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@ggiinnaa yes walking stairs catches me to and hills.. thank you so much 💓

REPLY

Hi,
I am 76 and have typical 19 mm carcinoid lung net they want to do lobectomy this coming month. I have been putting it off for various medical and personal reasons. I was dotatate positive but they say I am not having carcinoid syndrom, although I do get flushing at times and diarhea . I get short of breath with even mild exertion, not all the time though. I am also quite fatigued. They are going to do a CT scan with contrast to determine if it is my heart. Doctor has told me symptoms probably not due to the lung net, I am concerned that I will be even more fatigued and short of breath after the lobectomy. Did people find that their shortness of breath eventually got better after the surgery?

REPLY
Profile picture for stephanieann @stephanieann

Hi,
I am 76 and have typical 19 mm carcinoid lung net they want to do lobectomy this coming month. I have been putting it off for various medical and personal reasons. I was dotatate positive but they say I am not having carcinoid syndrom, although I do get flushing at times and diarhea . I get short of breath with even mild exertion, not all the time though. I am also quite fatigued. They are going to do a CT scan with contrast to determine if it is my heart. Doctor has told me symptoms probably not due to the lung net, I am concerned that I will be even more fatigued and short of breath after the lobectomy. Did people find that their shortness of breath eventually got better after the surgery?

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@stephanieann
I am age 78 yrs old.
I had a lobectomy in 9/2025
Recovery takes time.
Interventional pulmonologist says it takes usually a year.
I have intermittent shortness of breath which is not a major issue.
I am glad I was able to have the surgery. I am able to walk miles and I am less fatigued.
Trust your medical team!
I hope all goes well.

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