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Possible NET with No Evidence of Tumor: Mediastinal Mass

Neuroendocrine Tumors (NETs) | Last Active: Nov 2, 2021 | Replies (34)
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@colleenyoung

Hi Ava,
Thanks for adding your experience with Copper Cu 64 Dotatate (Detectnet). As you mentioned it was only recently approved by the FDA in Sept 2020.

Copper Cu 64 Dotatate has a high clinical sensitivity and specificity, which helps clinicians provide a more accurate treatment approach for NETs patients.

For anyone interested in learning more, here's information from Mayo Clinic and the FDA approval
- FDA Approves Copper Cu 64 Dotatate Injection for Somatostatin Receptor–Positive NETs https://www.onclive.com/view/fda-approves-copper-cu-64-dotatate-injection-for-somatostatin-receptor-positive-nets
- Copper Cu 64 Dotatate (Intravenous Route) https://www.mayoclinic.org/drugs-supplements/copper-cu-64-dotatate-intravenous-route/description/drg-20502439

May I ask what led your care team to order the Cu 64 test instead of gallium? Is it being used as the new standard where you receive care?

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Replies to "Hi Ava, Thanks for adding your experience with Copper Cu 64 Dotatate (Detectnet). As you mentioned..."
avawein | @avawein | Sep 20, 2021

Hi Colleen,

I've had 2 gallium 68 PET scans, one before my right hemicolectomy surgery in 2019 and one several months afterwards. The second scan showed I was all clear of NETs except for a very tiny lymph node in my neck. My oncologist measures my serotonin every 6 months and it never went down to within the normal range. From Jan. to July it went from 450 to 727. He knew there had to be a tumor somewhere producing the serotonin. The CT scans showed no new tumors so he ordered the CU 64 dotatate scan and that test picked up the two sneaky tumors in my liver. My oncology surgeon, said they were lit up pretty bright on the scan. The last serotonin test I had in August, just 6 weeks after the one in July, showed my serotonin went up to 852.

Both the gallium 68 and cu 64 dotatate are great tools, the gallium 68 is my oncologist's go-to test, but I'm glad he thought to use the cu 64 in my situation.

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