← Return to New paraganglioma

Discussion

New paraganglioma

Neuroendocrine Tumors (NETs) | Last Active: Aug 17, 2023 | Replies (8)

Comment receiving replies
@hopeful33250

@cudabrown
I appreciate the information regarding the history of this health issue, Cuda. I have also had neuroendocrine tumors (NETs), not paraganglioma but a different type and I so understand that often these are found incidentally when doctors are preforming other tests or scans. I have had three surgeries for NETs since 2003, so I consider myself to be a 20-year survivor of this type of cancer.

I would encourage you to read the biopsy report when it becomes available (either on the patient portal or when you obtain a copy from your doctor). As you read it, feel free to ask questions about anything that you don't understand. When you are dealing with a rare form of cancer, it is also very appropriate to ask for a referral to a specialist.

Are you considering asking for more scans or testing for the neck discomfort that you are experiencing?

Jump to this post


Replies to "@cudabrown I appreciate the information regarding the history of this health issue, Cuda. I have also..."

The doctor is waiting for the results of the 24 hour pee test. It will tell us if the hormones that paraganglioma secrete are still present in my body now that the bladder tumour is gone. Believe it or not, that can take up to 6 weeks. Can’t imagine why. I have an appointment in 3 days to discuss what could come next.