SDHB mutation, active Carotid & Vagal paraganglioma here (PG removed on Nov. 7, 2023) at MD Anderson.
I have had renal cysts and some GIST problems. From Mayo, Cleveland Clinic, and MD Anderson I have been told the same; SDH mutations will cause PG and PH, first targets after ganglia clusters and adrenal glands will be kidneys and/or GIST. Sorry, PG and PH are Paraganglioma and Pheochromocytoma.
I had an active PG, highest blood pressure recorded was 245 over 187, lowest was 88 over 65. Completely episodical. Blood and urine hormone tests are useless in this country. In other countries they can do trigger tests. For example, for PH (pheochromocytoma) an early diabetes test will shoot your blood pressure and rate way up.
My PCP has seen it with his own eyes. There are publications on trigger testing from Italy and Karolinka Institute in Sweden. I spiked during the surgery, thank goodness for my anesthesiology team at MDA.
To make a long story short, something NET in GIST would probably need its own name it sounds like.
Wishing you it is something simple. Best of luck. Keep up the good fight.