Connect
← Return to Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?
Discussion
Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?
Neuroendocrine Tumors (NETs) | Last Active: Dec 1, 2022 | Replies (13)Comment receiving replies
Many thanks for your response. I offer the following brief summary of Sharon's NET history.
1. Discovered during Whipple surgery 9/2014 - Chromogranin A at 4
2. 05/2016 - 2 tumors discovered in liver
3. 01/2017 - NET in liver confirmed via biopsy - Chromogranin A at 105
4. 05/2017 - MRI showed tumor growth - Chromogranin A at 158
5. 05/2017 -began Lanreotide monthly injections (120 mg.) - Chromogranin A at 50
6. 08/2017 - "stable lesions" via imaging - Chromogranin A at 50
7. 06/2018 - "slight growth" - Chromogranin A at 90
8. 11/2018 - successful thermal ablation conducted - post- ablation Chromogranin A at 82 vs. pre- ablation at 65
9. Lanreotide injections continue - imaging every 6 mo.
10. 10/2021 - second thermal ablation conducted - pre ablation Chromogranin A at 105 - post ablation at 61
11. 08/22 - Chromogranin A at 108
Some questions regarding the Chromogranin A test / procedure:
(A) As I recall the test procedure was changed several years ago - it was stated that this would increase values buy ~ 7% - the threshold value equal to or less than 93 ng/nl has not been changed - is my memory correct? If so, why has the upper limit not been changed?
(B) Sharon continues to be concerned that any increases in Chromogranin levels are not good. Her long time SCCA doctor (now recently on leave) requested the test monthly but also relied on imaging results.
(C) Her "new" doctor said the Chromogranin test is unnecessary and will not request to be done in the future. We are questioning this position
(D) In treating liver-based NET's, what is the medical consensus regarding the value of Chromogranin testing?
(E) What frequency is recommended?
(F) What value is considered a "red flag" specifically in the case of liver-based NET's?
Many thanks,
Mark
Replies to "Many thanks for your response. I offer the following brief summary of Sharon's NET history. 1...."
Connect
Hello @markmark007
I appreciate the additional information about Sharon's history with NETs. It sounds like she has had some successful treatments with thermal ablation, regarding the Chromogranin A testing and results. Here is some information from the Carcinoid Cancer Foundation website, "Elevated levels of 5HIAA is correlated with carcinoid syndrome and carcinoid crises. Prolong exposure of the heart valves to high levels of serotonin is associated with complications of the disease. Markers can be unique to the site of origin of the primary tumor. Foregut and Midgut are more often produce abnormal levels of bioactive hormones and proteins. Hindgut Carcinoid tumors are least often associated with most markers but will express Chromogranin A."
I would like to refer you to the Carcinoid Cancer Foundation website where you can find out more about diagnostic testing as well as the doctors who are specialists. Here is the link, https://www.carcinoid.org/for-patients/.
You do not mention blood testing for serotonin levels. Has Sharon had that as well?
Has the imaging been Gallium scan? Here is discussion on Connect with information about what type of NETs show up on a Gallium scan, https://connect.mayoclinic.org/discussion/what-nets-show-on-gallium-scan/.
I would also like to invite @tomewilson to this discussion. His wife has also been dealing with NETs for many years and he might have some thoughts for you. She has been treated at Mayo Clinic.
Has PRRT been suggested? How is your wife dealing with the roller coaster ride of this cancer diagnosis and the treatments, and the change of doctors?