1. < Neuroendocrine Tumors (NETs)

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

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niffenhobbin | @niffenhobbin | Apr 14 11:16am
In reply to @hopeful33250 "Hello @niffenhobbin, After your recovery, I would like to hear from you. Will you post again..." + (show)
@hopeful33250

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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Absolutely! Thank you and stand by. 😊

REPLY
niffenhobbin | @niffenhobbin | Apr 14 11:42am
In reply to @jlsgt "Are you currently suffering any symptoms? Because if not, the "waiting game" as you call it..." + (show)
@jlsgt

Are 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.

Jump to this post

I 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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jlsgt | @jlsgt | Apr 15 3:16pm

Everybody 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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mimighosh | @mimighosh | Apr 17 11:38am

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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