Primary Small Bowel NETS, Liver Mets
I’ve included a photo of my liver Mets in case others are interested in what it actually looks like. Photo was taken by NETS surgeon prior to removal. Keep in mind it is magnified & many of the spots are no larger than the head of an ink pen.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
That's interesting. Thanks for sharing. I've only seen my NETs on PET scans or CTs.
Thanks for sharing. Was this photo visible on PET scan or CT or MRI? I was only given the report but not the pictures.
This photo was taken during a “peek & see” outpatient laparoscopy after CT & PET scan. NET Oncology Surgeon needed to see & decide if surgery or shots/chemo/radiation would be the best option.
Interesting to know that & your doctor is so kind to do that and show you.
That is amazing. I'm curious, with those tumors being so small, was a CT scan able to identify them?
Dr was unable to get a clear view with the CT so he ordered a GA68 PET scan fusion. That allowed the Dr & Tumor Board to see (electronically) the best combined views of both the previous CT & PET scan. Interestingly enough the liver tumors did NOT light up on PET scan; it wasn’t until the Cytoreductive/debulking surgery he found all the tumors & ended up removing a triangle section (one-third) of the liver.
Hello @parker27, and welcome to the NETs support group on Mayo Connect. You are asking a good question regarding how small NET tumors are found. As @fraaseo posted, NETs are often not seen in a traditional CT but need a specific type of PET scan. Here is a link to some information regarding the GA68 PET scan that was mentioned in the post,
--GA68 PET Scan
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/ and
--PET Scan vs. 68GA Dotatate Pet Scan...
https://connect.mayoclinic.org/discussion/fdg-pet-scan-vs-68ga-dotatate-pet-scan-for-neuroendocrine-cancer/?pg=1#comment-911927
This type of scan can be very effective in finding even small NETs.
Have you had this type of scan @parker27?
Thank you for the info, I appreciate it. I have not had any type of PET scan. I have only had a a few CT scans. As stated above, I have symptoms that mimic carcinoid syndrome, but none of my blood or urine tests are indicative of CS, so the doctors (primary and endo) are not referring any more scans.
You could ask for an MRI of the liver if it continues. MRIs are commonly used to scan the liver and those little NET spots show up clearly.🙏
@stevestenburg31: You have been given good advise to ask for a MRI scan. I would add: ask that MRI be “with and without EVOIST contrast”.
I have experienced best test results using this type contrast to reveal best info on my NET Liver metastases condition. This will provide your NET Cancer Specialist the information to recommend best treatment. Best health to you…