Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Our multi disciplinary team is based at Froedert Cancer care center in Milwaukee, WI. We received our 2nd opinion from Mayo in Minnesota. Our 3rd opinion was from Dr. Lui, I highly recommend both if your able. Dr. Lui will do all of it virtually, and Mayo will require to go to one of their hospitals. Please let us know if you have other questions.

Thank you for your reply. Where is Dr Lui located?
So you received three opinions and recommendations on treatment. Would you recommend getting three opinions? I have just had my biopsy. I do not know the grade, stage or source. I understand that sometimes they can not locate the origin of a metastatic liver carcinoma. Since you had virtual and in person consultations, I am interested in your view of the two. I was wondering if it was better in person or if seeing images and virtual consult was equal value. Thank you. jlrogers200@yahoo.com

Hello @splendrous,

You were asking about second opinions. Mayo Clinic has three locations with NET specialists at each location (MN, AZ, and FL). Here is a link that will provide you with appointment information for an in-person consultation at any of the three Mayo locations, (http://mayocl.in/1mtmR63).

You were also asking about Dr. Eric Liu, renowned NET specialist. Here is a link to his office in Colorado, https://netrf.org/specialist/dr-eric-liu-md/. As it was mentioned, Dr Liu offers virtual as well as in-person consults.

Here is a list of NET specialists throughout the U.S. listed by state: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

As NETs is a rare type of cancer, getting more than one opinion is important and other opinions are best from a NET specialist. General oncologists do not usually have the specialized NET training that these doctors have.

I look forward to hearing from you as you proceed with obtaining another opinion. Will you continue to post as you work through this process?

Will be glad to share. Having more tests this week and next. Then will be doing an econsult with Mayo as my hospital is a part of the Mayo Clinic Care Network.

Thanks for the links. My understanding is that Mayo Jacksonville does not take Medicare Advantage plans, but Rochester does.

I have read on Mayo site that you refrain from eating certain foods and caffein prior to 5-HIAA test? If you have had that test, did you have dietary restrictions prior to the test? Thanks.

I have done this test twice and will do it again in December. I have never had diet restrictions.

Helle @splendrous

This question about how you should take this test would be best answered by the medical provider who is requesting the 5-HIAA. I have taken this test several times and I've never received instructions on dietary restrictions. However, like you, I have read about these restrictions from other sources. As I'm not a Mayo patient, I would check with your provider to be certain.

Thanks gesmone1 and Teresa, I am surprised that Mayo Clinic, MD Anderson, Carcinoid Foundation and many others continue to have information on diet restrictions on their websites for this test, if this is no longer the practice. I was also not given any dietary or medicines to avoid for the test. Teresa, you might want to mention to whomever is in charge of the website that they might want to review the information that is currently published on the web.

Hi everyone, I had my whipple done on May 2020 for Gastrinoma PNET. Since July 2024 (last CT scan on June 23) CT shown several white spots. Then followed up with MRI & Full Blood Test. Gastrin shot up to 700+ from 200+ in Jan 24 (within 6 months); CgA also shot up. Doctor ordered GA68 Doctate PET scan. Reflected enhanced small bowel mensentric / precaval lymph nodes but non specific. On 24 Sep, done endoscopy with removal of polys & doctor has sent for biopsy. Now referred to oncology. Wonder if any one has an experience where the scans are not very clear but both tumor markers are highz What options would the oncologist or surgeon recommend?

My husband has done this test twice now. He was provided with a list of food to avoid for 72 hours prior. We did our own research and found that multiple websites have recommendations to avoid food containing high levels of serotonin or those that may interfere with the assay. This includes caffeine, allergy and pain medications as well. Here are some websites we have found:
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/preparing-for-the-24-hour-urine-5hiaa-test/
https://www.mskcc.org/cancer-care/patient-education/24-hour-urine-collection-5-hiaa-test
https://www.ucsfhealth.org/medical-tests/5-hiaa-urine-test
https://netrf.org/for-patients/diagnostic-tests/5-hiaa-tests/