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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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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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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!
I would recommend you discuss w your medical professionals the possible insurance coverage risks once you go down the path of genetic testing...
That’s a good idea
"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 ReactionsI wouldn’t go through surgery unless you start getting symptomatic or here are additional sites.
Hi all, hoping spring is good and well for you.
I’m circling back to my post with an update. Recap : I had emergency surgery for a blockage and a primary 1cm 2% low grade stage 3 spread to 1/3 lymph nodes removed. December 10, 2024.
Surgeon fixed the blockage and poked around while he was there and found my tumor and performed a small 6cm small bowel resection. He had never seen this before and did not think it was cancer. I went to NETs specialist in Portland, Oregon and was given a choice to watch and wait. (Not getting any younger at nearly 52 female athlete quite healthy otherwise. Tolerated the bowel resection in December very well.) Alternatively to the waiting game, I was offered a surgery to, at minimum, remove 9 more lymph nodes and to visually and physically inspect my small intestines. All of it. And check out my liver. If he finds anything he will remove it if he can. Including gallbladder as a preventative because if he finds more I will be on one of the butt shots which can bugger up the gallbladder. All scans so far (CT and Copper PET) show everything is clear. CgA and 5HIAA normal. Long story longer, on 4/16/25 I am going for the surgery at OHSU. I’m not a watch and wait person. Don’t try and talk me out of it! lol.
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