Primary Small Bowel NETS, Liver Mets

Posted by fraaseo @fraaseo, May 14 2:44pm

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.

jlsgt | @jlsgt | May 16 9:26am

That's interesting. Thanks for sharing. I've only seen my NETs on PET scans or CTs.

jessie59 | @jessie59 | May 17 7:30am

Thanks for sharing. Was this photo visible on PET scan or CT or MRI? I was only given the report but not the pictures.

fraaseo | @fraaseo | May 17 10:59am

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.

jessie59 | @jessie59 | May 18 5:50am

Interesting to know that & your doctor is so kind to do that and show you.

parker27 | @parker27 | May 19 12:26pm

That is amazing. I'm curious, with those tumors being so small, was a CT scan able to identify them?

fraaseo | @fraaseo | May 19 6:11pm

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.

Teresa, Volunteer Mentor | @hopeful33250 | May 20 9:42am

In reply to @parker27 "That is amazing. I'm curious, with those tumors being so small, was a CT scan able..." + (show)

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?

parker27 | @parker27 | May 20 11:19am

In reply to @hopeful33250 "Hello @parker27, and welcome to the NETs support group on Mayo Connect. You are asking a..." + (show)

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.

stevestenberg31 | @stevestenberg31 | May 20 4:45pm

In reply to @parker27 "Thank you for the info, I appreciate it. I have not had any type of PET..." + (show)

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.🙏

dbamos1945 | @dbamos1945 | May 21 5:45am

@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…