Paraganglioma: Watchful waiting vs surgery?

Posted by gangcarotid1 @gangcarotid1, Jul 25, 2024

Am scheduled for tests & consults at Mayo week after next. Increasingly, I'm reading about a decision to do ongoing monitoring rather than get the darn thing out? Confused as to why I would want to 'watch it grow'. My tumor is smaller than most I've read about, and like many of you, was found incidentally during evaluation of an unrelated occurrence. Just curious if anyone has gotten the tumor removed and not just monitored on an ongoing basis.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

meg17 | @meg17 | 3 days ago

In reply to @meg17 "@gangcarotid1 It is better out than in..had the same operation.." + (show)

@meg17
Hi like I said the operation wasn't too bad..just remember that when you have one adrenal gland removed do not ever get steroid injections as the remaining gland can think it can shut down..easy for medics to say watch and wait..not so easy for the patient..good luck and post if you do end up out the other side of getting rid of it..

meg17 | @meg17 | 3 days ago

In reply to @gangcarotid1 "@meg17 How long afterward did you deal with the ongoing feeling that there's a big wad..." + (show)

@gangcarotid1 I understand the horrid 'chokeing' feeling that can accompany a thyroid growth..mine didn't improve until I had the Ablation Therapy which is basically swallowing a radioactive pill after a strictly salt free diet (as per salt has iodine and they want any residual thyroid tissue to suck up the radiation like a sponge)..I already had a total thyroidectomy and Ablation wasn't recommended at first which was a mistake..hope my journey with getting bits removed helps others..lol I now have no tonsils adenoids appendix thyroid or one adrenal gland 🙃

gangcarotid1 | @gangcarotid1 | 3 days ago

The choking feeling was from the coil insertion to divert blood supply away from carotid tumor the day before surgery to take the tumor. Its gotten slightly better, w several times daily a sharp short pain in my ear and face, WAY inside my face, not sinuses. And since the kidney malignancies, Ive developed thyroid issues previously nonexistent. Lotsa nodules 1cm or less. A biopsy last month showed the 1 they did an FNA on was benign. Since kidney malignancies can take decades to metastasize even w good margins from resectioning, and very often go to the thyroid, they're watching my kidneys and thyroid now.
Yes, I have no tonsils, no adenoids, 4 less lymph nodes, and 90% of my left kidney.🙃