To jls77
It sounds like you're wanting to know about people's experiences w paragangliomas. In April I had very swollen lymph glands on left side of neck. Antibiotics relieved that in a week, but a CT w contrast was done..is serious to only have glands majorly swollen on 1 side. CT of neck was symmetrical; a carotid body paraganglioma was found on RIGHT side, on the V (bifurcation) of the carotid artery, about 1.5 cm. I live in north Idaho; no one w/in 1000 mi who deals w these. As soon as ENT I was referred to said the word -biopsy' I shut him out and left when he stopped talking. WORST thing to do on carotid artery NETs is biopsy....makes them 'angry'. Researched all over US, and got signed up to see Endocrine dept. All members of triage team believe is benign. But something was causing hypertension, dizziness, fatigue,, so did full body CT w contrast and found 2 tumors on left kidney. Once I became Mayo Rochester patient, the ball started rolling more quickly. The Urology dept said was most likely malignant, and 85% chance of radical nephrectomy. Then wks b4 scheduled surgery, surgeon called (on a Sat!!) to say he believed he had a 95% possibility could save the kidney! No guarantees of course, but Wow!
Had surgery; got 100% of both tumors. Adrenal glands and bladder had no evidence of cancer. Will be going back in Jan for post-op CT w contrast & lab work & consults. No chemo or radiation. Am on a 30-day, nonfat (40 gr/day) chyle diet to keep lymph & white blood cells from getting overloaded with naturally produced chyle and keep healing lymphatic system from getting too much chyle, and causing a leak. No guarantee it'll never recur, but I just got a miracle and I'll do whatever they prescribe for the best optimal continued results. We'll be going back this next Spring to make a Plan for the CBT on my carotid artery. I may have an incision that looks like an autopsy was done, along w what looks like a stab wound from drain hole, but ask me if I care!
Wishing u the very best!