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
To @hopeful33250
Many thanks - I offer the following responses:
1. We have reviewed the C.F.C. site for location of NET specialists
2. She had had no serotonin tests
3. Regarding imaging: MRI or CT scans every 6 mo. - Gallium scan done on 04/2018 (confirmation of NET's)
4. PRRT mentioned as possible therapy if current treatment becomes ineffective
5. Sharon remains dedicated to win the "war" with this affliction - has some down moments as can be expected
As I recall, her blood sample for determining Chromogranin A is tested at the Mayo Clinic. Can someone answer the question (A) in my previous post?
Replies to "To @hopeful33250 Many thanks - I offer the following responses: 1. We have reviewed the C.F.C...."
Mark, you may also be interested in asking fellow members about their experiences with getting CgA monitored and what their teams do:
- High or Fluctuating Chromogranin A Level: What does it mean? https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/
- CGA (Chromogranin) results from different labs https://connect.mayoclinic.org/discussion/cga-chromogranin-results-from-different-labs/
Connect
Hi Mark, regarding your question about the Chromogranin A (CGA) test, I have found some information, which I think you already know.
From Mayo Clinic Laboratories:
Chromogranin A, Serum Clinical & Interpretive https://www.mayocliniclabs.com/test-catalog/overview/34641#Clinical-and-Interpretive
The reference value is <93 ng/mL
As per this article, https://www.testing.com/tests/chromogranin/, the CgA test has limitations.
Are test results accurate?
"Although CgA is the most widely used tumor marker in patients with a suspected or confirmed neuroendocrine tumor, CgA testing has limitations.
CgA levels can be elevated in a range of health conditions other than neuroendocrine tumors. For example, CgA levels may increase in people with irritable bowel disease, chronic hepatitis, liver failure, inflammatory diseases, and renal failure. Several medications can also cause an elevation in CgA levels.
As a result, CgA testing for neuroendocrine tumors may produce an elevated result that shows signs of a NET when a person does not actually have this kind of tumor.
Multiple laboratory tests are available to measure the amount of chromogranin A in the blood. Results can vary depending on the test that is used. If CgA levels are being monitored over time, it is important that the same test method be used each time.
If you have questions about the reliability of your test results, you can speak with your doctor or the laboratory that performed the test."
Mark, It can be unsettling when changing doctors and they approach monitoring differently. I think you are right to ask more questions to the doctor to better understand her position on discontinuing the CgA test and what she relies on for monitoring.
If you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63