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Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?
Neuroendocrine Tumors (NETs) | Last Active: Dec 1, 2022 | Replies (13)Comment receiving replies
Hello @markmark007
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.
Replies to "Hello @markmark007 I would like to join @colleenyoung in welcoming you to Connect. While I don't..."
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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?
Many thanks,
Mark