New paraganglioma

Go to Wikipedia and look up paraganglioma. I think you will find it very helpful. I am being treated for lymphoma, and am halfway through the regime. I was alarmed when the diagnosis first came in, but my oncologist was very reassuring. I had lymphomas scattered from my head, neck, chest, abdomen, and pelvic region. The chemo that I'm getting is supposed to get rid of it all. A PET scan next week will tell. So far I have had surprisingly mild side effects. There have been tremendous advances in treatment of cancer, better prognosis with fewer problems. Be of good courage!

Hello @cudobrown and welcome to the Mayo Connect support group.

I found some information that you might find useful in understanding paraganglioma. Here is a link from the Mayo Clinic website that provides good information. As you can see, these tumors can be benign or not.

If you are comfortable sharing more, what symptoms led to the diagnosis of the paraganglioma in your bladder? Were you having neck pain that led to the discovery of a possible paraganglioma there as well?

I had a CT of my lower abdomen last March for a completely unrelated reason. The radiologist that read the results included in his report that he saw an unknown mass in my bladder that should be investigated. Thank heavens for his sharp eyes. I was referred to a urologist who stuck a camera up there, saw the tumour and then removed it two weeks later.

I have been having neck pain for over 2 years but my doctor couldn’t figure out why. When I got the pathology report on the tumour, I started to research paraganglioma and put two and two together. I’m still waiting on the results of my 24 hour pee test.

Thanks for the info links. It is very kind of you to make this effort for me. I may get back to you after I check them out.

Thanks
Cuda

@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?

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.

Hello @cudobrown,

I'll look forward to hearing from you again after your appointment. In the meantime, if you have any other questions or concerns, please reach out.

So I spoke with my family doctor yesterday. He’s not a great doctor - very apathetic. I told him I thought there could be a connection between my neck pain and my paraganglioma. He discounted the whole idea because I looked it up on the internet, which is full of “misinformation”. He told me I was fine.
You also need to know that I haven’t actually seen him in person since before COVID, he does phone call appointments only. I live in a small city in Canada and if I leave him as a patient I will have no doctor at all. I would have to rely on walk-in clinics.
The results of the 24 hour urine test are still not back. I made another phone appointment for early in September, hopefully to discuss those results.
Not sure what I’m going to do next. There are few specialists here, I would have to drive 4 hours to the nearest major city.
I guess I’ll just continue to do research and wait for my results.

Thanks for the update, @cudobrown. You are wise to keep up your research and wait for results. Probably, a 4-hour drive to consult with a specialist, would help you to have peace of mind.

Do you have any specialists in mind? Is there a clinic where you would feel confident getting a second opinion?