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Cu PET results show no malignancy. What’s next?
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
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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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2 ReactionsAlso had the low ferritin in my tests but not this last time
It’s been a whirlwind but we stay strong! Keep us posted. Thanks for sharing.
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1 ReactionMy 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!
You have been through a lot the past 6 weeks. I too had a NET 1.5 cm in the ileum The NET was found on a colonoscopy after my Cologard was positive. I did not have symptoms of the NET until after my colonoscopy. My symptoms were partially obstruction of the small bowel. CT chest/abd negative. I had a dototate Pet scan which showed only the NET in the ileum, grade 1. All the lymph glands were negative. I am post op 3 weeks. I am seeing an oncologist next week, mostly for test followup.
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2 ReactionsThanks for sharing. I’ll update after my Net specialist appointment. We may both somewhat “lucky” to catch this early. When I was at three weeks post op I had to tie myself down! I felt great but knew I had to still be mellow (Crazy active life for me! Was back on the snowboard at 5 weeks)
Sounds like you're feeling really good, which is awesome. I suspect you can go to a once a month Lanreotide shot for maintenance and live a long time.
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2 ReactionsOh mine was slightly low, can’t remember the numbers but will check on it.