Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Hello @titansmistress,

I see that this is your first post on Connect. I'm glad that you joined this discussion as a Pnet patient. I am Teresa, a volunteer mentor, on Connect and also a NET patient, having had three surgeries for NETs in the upper digestive tract (considered mid-gut). By the way, how did you find this discussion group?

As NETs is a rare disorder I am always glad to have someone share their experience in this group. Please feel free to share more of your story with Pnet if you are comfortable doing so. How long ago were you diagnosed? Have you had surgeries and/or other treatments?

I look forward to getting to know you better as you share in this online Community.

Teresa

After many years of being misdiagnosed I became a patient at Mayo in Dec. 2017. I was diagnosed w/a pancreatic net @ Shands UF in Oct. 2016 via EUS and biopsy. Shocked when UF said not to worry, it's a slow growing tumor. I had soo many symptoms and years of painful bouts of pancreatitis. Myself not knowing it was pancreatitis and that it was not all in my head. I spent 2016-2017 researching my symptoms and w/multiple GI dr.s finally got answers and demanding a referral to Mayo. I found Connect when I became a patient but due to surgery Jan. 2018 then a post op fluid collection July 2018 I've been to ill with recovery and symptoms to Connect. I apologize for the long delay in my reply.

I'm so glad that you posted again, @titansmistress. It sounds like you have had quite an experience of surgery and post-op problems. I'm glad that you are well enough to Connect with us again. Please feel free to share some of your experiences as you are comfortable doing so. I'm looking forward to getting to know you better.

How are you feeling now? What type of surgery did you have? Has there been any monthly injection treatments since your surgery?

Hello @nigelvw

I hope you are doing well. You last posted awhile back and I was thinking about you. I would enjoy hearing how you are doing now. Any new treatments?

Hello @jls77

How is your husband doing with his paraganglioma tumor diagnosis? When you last posted he was managing his pain and you were looking for some other treatment options, perhaps at Mayo. Has he been considered for PRRT treatment?

What is NETS

Neuroendocrine tumor - the cancer that Steve Jobs and Aretha Franklin died from.

Hello Francis:

I appreciate your asking about NETs. As @tomewilson said, NETs is a form of cancer. It is rare, however, and many people have never heard of it before. For many of us, we first learned about it when we were diagnosed. Here is some information from the Mayo Clinic website that explains it further. Just click on the link and you can read more about it.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/care-at-mayo-clinic/mac-20354135
Would you care to share why you are interested in NETs? Have you or a family member been diagnosed with this disorder?

Hey Teresa, it seems you are active on here...I was wondering if you knew, does Mayo Jacksonville offer PRRT?

neuroendocrine tumors

I had the PNET-pancreatic tail/spleen removed Jan 2018 then a very large post-op fluid collection removed July 2018. I'm struggling mentally & physically with persistent symptoms. Abdominal and back pain, freq. urination, freq. thirst, dehydration, loss of appetite, whole body aches w/burning, night sweats, fatigue, weakness, ringing in my ears. Sometimes nausea, headache, insomnia, indigestion, sore throat, sinuses run or stuffed up. I feel like I'm stuck in a bad nightmare. I do everything I can to eat well, stay hydrated, stay on a sleep schedule etc...but it doesn't matter what I do the problem symptoms persist to the point that I'm very depressed. I even took Elavil for months. It helped my mood but I experienced side effects and I discontinued. I'm so frustrated with my health & doctors.