Welcome to the NETs Group! Come say hi.

Hi all, many of you in the NETs support group have met @ahtaylor. @hopeful33250 interviewed her for this week's Member Spotlight. Learn more about what @ahtaylor finds special about connecting with fellow members on Mayo Clinic Connect, how she find balance in life, and what food she just can't resist.

- Giving it All You've Got: Meet @ahtaylor https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/

I have pancreatic NETS that have spread to my liver. I was diagnosed in August. I am a Mayo patient. My care team is amazing. I started my 6th CAPTEM chemo cycle today. My year end scans showed the cancer isn't spreading and the three large tumors all decreased in size. My wife has been awesome. This isn't easy. Over time through trial and error, we have learned to manage meds and my body better. I am 57. I was told that I will have to continue to manage the cancer the rest of my life. It isn't going away. I appreciate the honesty of my care team of 6. I have a patient portal where I can send or receive messages 24x7. I also have a dedicated hotline to call. The hardest part initially is understanding all of the medical lingo. When I first met the doctor, I told him that I didn't understand anything he was telling me. Dumb it down for me. He asked if I liked pictures. My wife said we both do. 3 pages of doctor drawn pictures and 15 minutes later, the doctor answered all of our questions. I started chemo a few days later. Comments, questions, please share.

Hello...I am a new member here and I am scared. And was recently diagnosed with neuroendocrine tumors of the esophagus and liver so far. My pet scan is scheduled for this coming Monday and I pray I don't light up like a Christmas tree.
The tumor on my esophagus is low grade, and the tumor on my liver is more advanced. I will have more information next week after pet scan.

Hello @annct and welcome to the NETs discussion group on Mayo Clinic Connect. As a newly diagnosed, this is a good place to be where you can get information and support from other members who are also diagnosed with NETs.

I look forward to hearing from you again. If you are comfortable sharing more, how was it that you were diagnosed? Were you having symptoms that led to scans or was this an incidental finding? Has surgery or other treatments been suggested yet?

Hi, I am living in Adelaide. South Australia. I went through chemo with non Hodgkins lymphoma a few years ago, and now after 2 major operations am dealing with N E T S. Firstly in my ileum, and successfully removed, and then 2 years later, after a body scan, and removal of tumour material outside my intestine, and further inoperable tumours , very small and stage 2 in stomach lining. I am having Sandostatin lars injections monthly and so far have had 4 treatments. I am having blood tests, and another scan in April to see if the hormone inhibiting injections are keeping the tumours from growing. Would love to hear from anyone out there dealing with similar problems .

Hello @tomrennie and welcome to the NETs discussion on Mayo Clinic Connect. It sounds like you have an incredible medical team at Mayo! That is good news that the cancer is not spreading and that some of the tumors have been reduced. You must be so pleased with these results.

I love the way you asked your doctor to "dumb it down." I may use that at some time in the future. The fact that your doctor took the time to draw pictures is great. You are correct when you say that cancer is something that needs to be managed for the rest of your life. So true!

I have had three surgeries for NETs in the upper digestive tract and mine were found "incidentally." In other words, I wasn't having any symptoms, they were found during a routine upper endoscopy.

I would be interested in knowing how your cancer was diagnosed. Were you having symptoms that led to the diagnosis? What type of tests/scans were done to determine that this was NETs?

@judylong, I wanted to check in with you. Did you decide to get a second opinion? What is your treatment plan?

@rnelson63, you may be interested in these related discussions:
- Pheochromocytoma: Anyone being treated for an adrenal mass? https://connect.mayoclinic.org/discussion/pheochromocytoma/
- Advanced metastatic paraganglioma diagnosis https://connect.mayoclinic.org/discussion/advanced-metastatic-paraganglioma-diagnosis/
- Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/

Have you had anymore clarification on your diagnosis and next steps? How are you doing?

Great tips, @ptk1776. Are you currently on treatment? May I ask, do you have an ileostomy?

In process of getting a Dototate petscan to see if others tumors have it within the next two weeks. If it is just the one, I guess it will be surgery and if more than the one, treatment TBD. Have followup appointments with both thoracic surgeon and neuroendocrine specialist. (I had endoscopy and colonoscopy last week--all good). Thank you for keeping up!