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Cu-64 Dotatate 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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"What would you do?" you asked. I"m pretty much in the same situation. I still have a NETs type mass and have hot lymph nodes near the small bowel after a SB resection. I have a PET scan every 6 months monitoring. I feel good and NOT going to have another surgery until some real cancer growth or symptoms demand it. My cancer is slow growing and maybe I'll get lucky and go a long time without additional surgery.
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2 ReactionsThat’s a good idea
I would recommend you discuss w your medical professionals the possible insurance coverage risks once you go down the path of genetic testing...
Thank you for this info. My doc said I was done with PET scans of any sort. I have a follow up in two weeks and will ask about them again. He said that sometimes net cells are so small they don't show up on scans. What info is obtained from genetic testing that you know of?? I appreciate your input greatly! We are a rare lot!
My net sounds similar except prior to surgery there was only one net in the ileum by the dotatate scan and only the one found during surgery. Lymph nodes all negative. I saw an oncologist this week. He suggested a dotatate scan in 6 months. He also suggested genetic testing.
UPDATE...
NET specialist says I'm lucky. And rare as my SBNETs does not seem to have appeared in my liver. I could watch and wait with liver scans every year. I could have a second surgery to remove some more lymph nodes as well as have the surgeon inspect my small bowel by feeling each and every part with his fingers and inspect my liver. I feel I know what I want to do. What would you do? Or did you do one of the above choices? What a wacky situation. I want to close my eyes and have it be all over with....
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1 ReactionOh mine was slightly low, can’t remember the numbers but will check on it.
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 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)
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1 ReactionYou 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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