Cu-64 Dotatate PET results show no malignancy. What’s next?

Posted by niffenhobbin @niffenhobbin, Jan 24 5:35pm

Hi all,
I was diagnosed six weeks ago with NET after a small bowel blockage. NG tube and a ton of pain meds relieved my symptoms (extremely pain and violent vomiting). Surgeon gave me an option to skip the exploratory surgery since my symptoms were gone after 36 hours. I said to the surgeon, “You go find what the heck is wrong with me!” So he did! He found, as he put it, “an open window in my omentum (fat layer covering intestines) and my small bowel wandered out the window. He closed said window and went on a walkabout around my insides. He found a 1cm tumor, removed it along with three lymph and a total of 6cm of my small intestines. Biopsy came back three days later as low grade, 2%, well differentiated, stage 3 NET of the ileum. It was in 1 of the 3 lymph nodes and into my muscle (hence the stage 3 is how I understood it to be) CgA was normal (58). Urine 5 hiaa normal. Chest and liver CT showed nothing except an “benign adrenal adenoma.” Had Cu PET yesterday. No positive malignancy. I have an appointment with NET specialist in Portland OR (Dr Pommier) Monday. I know some NET don’t have receptors and wondering what the next steps may be and while I know no two are alike… has anyone ever experienced something like I have? I feel it was caught early and sort of accidentally. I also had been trying to get to the bottom of low ferritin and upper and lower endoscopies were normal. (Low ferritin can mean a bleed somewhere… maybe the net?) I’m thankful for this discussion group and hope you are all managing as well as possible. Thank you.
51 female

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@azimal1

Also had the low ferritin in my tests but not this last time

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My ferritin was 4! Then jumped to 9. Been staying on
my iron pills so hopefully it will jump. I had zero symptoms from low ferritin. Really odd!

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@azimal1

I am in similar situation. Just found it by accidentally during upper endoscopy so trying to figure out next step. I have an appointment with oncologist on Monday & I have just started my search. No advise to offer but hopefully, we both figure out the best option route for our situation

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It’s been a whirlwind but we stay strong! Keep us posted. Thanks for sharing.

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@azimal1

I am in similar situation. Just found it by accidentally during upper endoscopy so trying to figure out next step. I have an appointment with oncologist on Monday & I have just started my search. No advise to offer but hopefully, we both figure out the best option route for our situation

Jump to this post

Also had the low ferritin in my tests but not this last time

REPLY

I am in similar situation. Just found it by accidentally during upper endoscopy so trying to figure out next step. I have an appointment with oncologist on Monday & I have just started my search. No advise to offer but hopefully, we both figure out the best option route for our situation

REPLY
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