Paraganglioma removed without ongoing monitoring?

I had a 10 cm tumor found incidentally in 2016 that was removed with the left kidney and adrenal gland as well. Turned out to be extra-adrenal pheochromocytoma/paraganglioma. I believe the decision to remove the tumor was largely based on the results of certain blood-urinary testing also correalating with typical symptoms, headaches, out of control hypertension etc.

Thanks for your response! I'm hoping they remove mine... I can't understand why they'd just 'watch it grow'. Mine is inherited (40% hereditary CBPs) from my dad. They were unable to remove the entire tumor (didn't want to scrape THRU his carotid artery) and he passed away.

@gangcarotid1, according to this info from Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/paraganglioma/cdc-20352970)

"Paraganglioma treatment usually involves surgery. ... In certain situations, such as if the paraganglioma is slow growing and isn't causing signs and symptoms, your doctor may recommend against immediate treatment. Instead, your doctor may monitor your condition during regular follow-up appointments."

As you prepare for your appointment, you're asking good questions:
- Why not just remove it?
- Is surgery a risk for me?
- What is the advantage of watchful waiting?
- What criteria will indicate it is time for treatment?
- My dad passed away from a paraganglioma. I'm worried about my outcome. Can you give me more confidence in the treatment options?

@gangcarotid1, do you have symptoms?

Yes, hypertension, tremors, anxiety/depression, dizziness (vertigo?) & mild pain in my right ear area and under the ear. Have to be careful how I move my head.. vertical back and forward feels like intense stretched rubber bands. To the left horizontally is less irritating than to the right. Usually feels like I have the mumps. Not terribly painful, but fairly constant.

So, have just finished my marathon at Mayo. Good news, all 3 surgeons agree, NOT malignant, and all 4 agree I did not inherit this from my father. However, w the full-body tomography w contrast, they found a 5.1 cm "mass" on my left kidney. All surgeons do not believe it's related. Had CT w contrast this a.m. of the abdomen/pelvic area b4 we fly out later today. Have telehealth visit w endocrine surgeon next week, then return in 3 wks to see the kidney specialist.
I am SO relieved at the carotid artery tumor conclusion of all the surgeons They all say it's small enuf and still no complexities with hormones or nerves connection issues, and are fine w me mulling it over for awhile, but all say, it will not go away, if will not get anything but larger, albeit slowly, and I am not getting any younger. They actually said w me being in very good health, that if I was their mother/sister/daughter, they would take it out.
Am exhausted but have gotten alot of questions answered and alarms calmed. Feel like I've been pulled thru a knothole 47 times backward, but it's ok.

Just saw the drs at Mayo yesterday. My kidney tumors, at opposite ends of the left kidney, are likely cause to remove entire kidney, but they will try to save it if it looks possible at surgery time. Tumors are also likely malignant, but appear to be confined to the kidney. They caught it early enough, I'm not having symptoms (except for the symptoms related to my tumor on my carotid artery) & am in very good health, so hoping for the best. That C word is just alot to swallow; I was a mess yesterday.

@gangcarotid1, how are you today? Do you have a date for surgery?

I do not yet. I have a telehealth mtg w a surgeon on the kidney team on Oct 4. They probably would have set it up for sooner, but my husband just had rotator cuff surgery this week, and we told them we'd like to squeeze his surgery in b4 mine if possible. Our daughter, who's a PT, said he'd be able to travel in his brace/sling by Oct.
I'm doing a little better. Still daunted by the C word, but only melt down every 5-6 days now... Have a friend who's 19 yrs cancer free who has been a GodSend. Doesn't tell me what do do or think. Just encourages, listens, and hugs.

Coincidentally you asking me yesterday if I had a surgery date set. Today I got a call saying they have an opening, and wanted to know if I'm interested in having surgery Oct 14!! Of course I said Yes! Additionally the kidney surgeon believes there's a 90% chance he can save my kidney. Can you see me walking on air? Am so elated and have gained back ALOT of hope!

@gangcarotid1, such good news. I'm glad that you have a friend who understands that value of listening.