Dotatate lights only in liver, but report says metastatic to liver?
Cat Scan shows 4x3 cm mass in liver and lesions in other lobe. Biopsy results neuroendocrine liver tumor. KI-67 6-8%. Synaptophysin and CK Cam positive. Chromogranin A normal reading. CDX2 negative.
5-HIAA had normal reading. Dotatate PET/CT found multiple lesions in the liver consistent with metastatic lesions. Anyone else had similar findings? Dotatate says metastatic but does not show any lesions but in the liver. Biopsy does not mention metastatic. From my reading 4x3 cm seems large but nothing was seen in scan 2 years ago, so does it grow that fast? I have read that sometimes the origin is not found. Does it make a different in treatment?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I'm being treated at IHC Oncology in Utah. My oncologist specializes in NETS and was educated at Vanderbilt. There has been no growth since I started the Somatuline Feb2023. I was told it usually works for 3 yrs but I've met people who have been on it longer. We haven't specifically discussed the next step but eventually maybe PRRT or another. I did have the primary NET removed from my SI 4/21/23 . It was an emergency operation as it was blocking my intestines. They took the 2.5cm tumor, 10in of SI, GB, and some lymphnodes that had cancer cells too. I too have innumerable nets in my liver so not likely they can cut them out. Thank you for sharing. Having more information is helpful. I hope the best for you. 🙏💚
I am glad to hear that the treatment has kept the tumors from growing! I wish you well on your upcoming scan. Thanks for sharing.