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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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Hello. My husband was diagnosed with grade 1 stage 4 NET last year, with primary tumor in the small bowel. From everything I have learnt about NETs so far, it is not at all uncommon to "wait and see". He is currently doing the same with monthly Lanreotide injections and 3-month scans. The question of surgery has come up, but we are not choosing that route at this time, because surgeries come with their own complications (and long-term lifestyle changes sometimes) and there are no guarantees that other tumors will not get discovered later down the road. I also do not understand the concept of 12 lymph nodes. I would definitely ask to see that study.
Having said all that, everyone's NET journey is different. I would advise you seek multiple opinions though and also definitely consult with one or more NET specialist, not just any oncologist.
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1 ReactionEverybody has a different journey with this cancer. Why 12 nodes exactly I wonder? I have not seen that study.
A friendly surgical Oncologist once told me, "Remember, a surgeon wants to do surgery." I think I guard against that in general. 🙂 Took me a year to get over my last one and that included having to be on TPN for a month.
I've had several Copper and Gallium PET scans. I think the Copper version shows more detail, but I'm just a patient. 🙂 Boy, I wish I could have a clear one.
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1 ReactionI have zero symptoms. As per my NET specialist, nine more lymph nodes should be removed based on a large study that reflects removal of 12 lymph nodes relates to better long term longevity even if there is no cancer in them. I’ve already had three removed. While he is removing those lymph nodes he will inspect my small bowel as it is quite rare for there to only be one (removed during resection 12/2025). As you may know, sometimes scans do not show NETs. For me, quality of life is knowing that I’ve done everything I can right now to remove tumors out of my body. Watching and waiting makes zero sense to me. Wait to get sick?…To wait for something to show up in a scan every year for the rest of my life or go have a minimally invasive surgery to KNOW there are no more tumors. To me the choice is obvious. Maybe to others it is not. I travel a lot and will not have peace of mind if I am in a third world country and have another blockage from an undetected tumor. For me this will better my mental health by knowing that I did every thing possible as soon as possible. I trust my doctor tremendously. I’ll keep yall posted. Thanks.
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1 ReactionAbsolutely! Thank you and stand by. 😊
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1 ReactionAre you currently suffering any symptoms? Because if not, the "waiting game" as you call it is living a quality life. If you just had a PET scan and it is clear, why have surgery? Just curious how you are doing right now and the logic behind additional surgery that may or may not be of benefit. Best of luck to you.
Hello @niffenhobbin,
After your recovery, I would like to hear from you. Will you post again and let me know how the surgery went? Wishing you all the best!
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1 ReactionThis Wednesday 4/16/25
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2 Reactions@niffenhobbin, I appreciate the update. When will you have surgery?
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1 ReactionHi 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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3 ReactionsI wouldn’t go through surgery unless you start getting symptomatic or here are additional sites.