Do any participants out there have experience with specific SCCA doctors who treated their NET's ?
Mark on behalf of Sharon.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.
Welcome @markmark007 (and Sharon). I don't have a SCCA doctor recommendation, but I would like to get a bit more info so that others can help, like @hopeful33250. What type of NETs does Sharon have? Has she had any treatment thus far?
I would like to join @colleenyoung in welcoming you to Connect. While I don't have any knowledge of the doctors at SCCA, I would highly recommend that your wife be evaluated by a NETs specialist, instead of a general oncologist. If you go to the Carcinoid Cancer Foundation website, you will find a list of specialists located all over the world.
As a three time survivor of carcinoid surgeries, I am also wondering when your wife was diagnosed with NETs and what, if any, treatment she has had so far.
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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?
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?
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?
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
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/
Many thanks for the responses –
After reviewing the CCF site for local NET specialists, the name of Dr. Nancy Sharma in Issaquah, WA was mentioned.
Does anyone have experience with being a patient of Dr. Sharma?
Re. Dr. Nancy Sharma
The above doctor is listed on the CCF web site as a NET specialist.
Has anyone been / are currently a patient of hers?
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