NET of the Rectum: Anyone at Mayo Jacksonville? What can I expect?

Welcome, @teresap1976. I'm tagging a few members who are familiar with rectal NETs like @amariewilkinson @4237220 @danny11 @jfh73 @mikecincy.

You might also be interested in this related discussion:
- Anyone treated for NETs at Mayo Clinic in Jacksonville, FL
https://connect.mayoclinic.org/discussion/patients/
I can understand how seeing the diagnosis in black and white can suddenly make it real and hit hard. When will you have your first appointment at Mayo Jacksonville? Have you been there before?

I had a random and surprise/very rare diagnosis with Mayo in Rochester Minnesota 3 years ago. I had 2 cancers found in the rectum in a really bad spot. The tiny bit of Neuroendocrine Carcinoma (NEC) found was a surprise to my 2 Mayo surgeons too after removing it first and saving my behind from the permanent colostomy bag. I then did all the chemo and radiation plus hyperbaric later to undo the ulcerations caused by radiation. Please reach out if you wish!

My first appointment is at the first of December. I’ve never been to Mayo so I have no idea of what to expect. I’m kind of nervous.

Hi Teresa,
I had a tiny NET found in my rectum on my first colonoscopy. It was low enough that it could be anally resected with a scope. These are slow growing tumors. I would recommend getting a second opinion from the University of Iowa or Rocky Mountain Cancer Center. I was told I was good to go after this, but it has come back outside the rectum and mets to the liver. Which will require a bigger surgery the middle of Dec. Insist on good scans Pet, CT and MRis to make sure it isnt somewhere else. Also, do every thing possible to avoid getting a permanent colostomy. There are new sphincter saving methods now for neuroendocrine rectal tumors which is totally different from treatment for rectal cancer. Get the best surgeon and oncology staff possible trained im NETs. Not a general colorectal surgeon who may have only heard of or treated a NET once or twice. You have time to find the best solution so perhaps it never back like mine. Follow up with scans periodically after surgery as well. All the best, Cristal

Hi Teresa, I’m currently a patient at Mayo in Jacksonville. I have been treated this year for a pulmonary carcinoid, which is a NET in the lung. I have been very happy with Mayo. After my diagnosis, I thought for a bit I would need a lobectomy to remove the tumor, but I had an ablation procedure instead, which was much less invasive and kept more of the integrity of my lung. The oncologist, interventional radiology, and pulmonologist I see seem ‘top notch’ and they are all in one place. The Mayo system is very organized and I feel you couldn’t be in a better place. I know how you feel, wanting to get it over with and get back to normal. All the best, Tammy

Hi Teresa, My NET was found at my first colonoscopy in May 2023 by my GI doctor, and I had a followup endocopy ultrasound with the same GI doctor to remove more tissue around the original polyp spot for biopsy. I also went to see a NET specilist at Ohio State Univeristy (which is in a neighbouring city, but only 100 mins away) and requested a PET/CT scan there. I didn't receive any treatments since NET cells were only found in the ployp from my first colonoscopy. I just went back for another colonscopy with my GI doctor in Sep 2024 and the biopsy showed negative of NET. But I do understand it may come back any time or it is hiding somewhere but undetectable at this moment.
There was some unease right after the diagnosis, but after reading other people's stories and talking to the NET specilist, I have learnt to make pease with it. All the best, Mike

No need to be nervous, @teresap1976. You will be in good hands at Mayo Clinic. You might be interested in the discussion in this support group too:
- Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

As you prepare for your first appointment in December, don't hesitate to ask questions. Have you booked a hotel?

Hello,
Can you tell me what caused you to even look at the rectum for Neuroendocrine Carcinoma? I have been having excruciating pain on my right side of the lower rectum for years now and only sitting on ice gives me any relief. I also have two Neuroendocrine tumors on the top of my Pancreas, with one surgery in 2015 while in a clinical study at NIH. Having MRI and CT scans, along with the Gallium 68 Scan every year and no one has been able to tell me what is causing this terrible pain. Many thanks! Ken

Mine was found via colonoscopy. I have had stomach issues my whole life that were undiagnosed. Since I started really voicing my issues, they have found gallstones, enlarged liver, thin walled bladder, a hiatal hernia, an umbilical hernia as well as the tumor in the rectum. I guess I’m really lucky they found it sooner than later. I have always had random pain in the rectum that went dismissed for years. Maybe it’s the cause of that strange pain.