1. < Neuroendocrine Tumors (NETs)

High or Fluctuating Chromogranin A Level: What does it mean?

Posted by kaforester3 @kaforester3, Apr 24, 2020

I’m not sure if I’m in the right place or not but I started this conversation here bc my Levels were so high. Has anyone ever had levels that high and what did the doctor say was wrong with you? I’m kind of freaking out bc they are jumping right in and sending me to get a octreotide scan in the next week. Someone please help me because the GI doctor isn’t saying anything.

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siluka | @siluka | May 9 1:07am
In reply to @colleenyoung "So proud of you, @bestrong. How did you manage to deal with your feeling of claustrophobia?..." + (show)
@colleenyoung

So proud of you, @bestrong. How did you manage to deal with your feeling of claustrophobia? What tips would you give to other people who are worried about doing an MRI?

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eye mask and counting. Also had someone touch my foot through out scan

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 9 3:54pm
In reply to @siluka "hi i had a bowel section to remove net tumours and also lymph nodes my cga..." + (show)
@siluka

hi i had a bowel section to remove net tumours and also lymph nodes my cga then was 364 (2 years ago) last year this time was 103 now 125 i do have 3 lesions on liver which is not known yes ct and mri follow up this week. last year pet scan showed no intake or tumours. I thought my cga was high but others are way higher. yes I am very anxious.

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Hello @siluka and welcome to Mayo Connect.

Your concern about the CgA levels and the lesions on the liver are all understandable. How are you feeling since your surgery? Are you able to eat without digestive issues?

I'm glad that you will have a follow up CT and MRI this week. Do these tests represent the first follow up since your surgery?

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siluka | @siluka | May 9 5:52pm

i actually feel good since surgery. I have had check up every 6 months since surgery. they found 1 lesion hypervascular on ct then sent for pet ct scan and no up take (may 2023) mri in october 2023 and it showed 3 lesions on liver undetermined. Had ct scan yesterday and mri on Monday. then see my surgeon in June. Digestive after surgery has been great. I can now eat food i couldn't eat before used to get GERD badly. I did have 1.5m of my ileum removed

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 10 5:59am
In reply to @siluka "i actually feel good since surgery. I have had check up every 6 months since surgery...." + (show)
@siluka

i actually feel good since surgery. I have had check up every 6 months since surgery. they found 1 lesion hypervascular on ct then sent for pet ct scan and no up take (may 2023) mri in october 2023 and it showed 3 lesions on liver undetermined. Had ct scan yesterday and mri on Monday. then see my surgeon in June. Digestive after surgery has been great. I can now eat food i couldn't eat before used to get GERD badly. I did have 1.5m of my ileum removed

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That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of digestive issues is great. Posts, like yours, encourage others who are facing surgery.

I'm wondering if there was a specific eating plan that helped you after the surgery of the ileum? Any do's or don'ts that you might want to pass on to others who are anticipating this type of surgical treatment?

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1 reply
siluka | @siluka | May 10 3:50pm
In reply to @hopeful33250 "That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of..." + (show)
@hopeful33250

That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of digestive issues is great. Posts, like yours, encourage others who are facing surgery.

I'm wondering if there was a specific eating plan that helped you after the surgery of the ileum? Any do's or don'ts that you might want to pass on to others who are anticipating this type of surgical treatment?

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always keep an eye on your iron and b12 levels with blood tests. I do get b12 injections every 3 months and take multivitamins. Also I have here in Australia Sustagen a nutrition supplement which comes in powder for (like milo). I eat most foods now but still cannot tolerate some acid producing foods like tomato. Dietitians put me on a high protein diet. Still i cannot gain much weight but trying. hope this helps.

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