Newly diagnosed with NET in liver

Posted by spartan @spartan, Jul 4, 2019

Hello - and so grateful to find this group. I just received the diagnose earlier this week and have been trying to find info. Trying not to get too ahead of this before I meet with oncologist next week. Thankful for your perspective for newly diagnosed. I have other chronic health issues (cardiac and diabetes) which is huge concern.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

sophiarose | @sophiarose | Jun 18, 2022

In reply to @tomewilson "Here is a Primer for those new to neuroendocrine tumors. I hope this helps. Message back..." + (show)

Thank you
Your information was very interesting
I am just starting my road to wherever
I had 2 tumors removed from my liver in Dec of 2019
It is now back in my liver

christine714 | @christine714 | Sep 15, 2022

I was diagnosed with a NET in my liver, the source of the tumor is in my small intestine. I will be having surgery at the end of September. I would like to know how to join the support group that meets monthly. I would also appreciate advice or suggestions from others who have been through surgery on their small intestine and liver. What is important to ask or know going into this surgery? Thank you in advance for your help.

Colleen Young, Connect Director | @colleenyoung | Sep 15, 2022

In reply to @christine714 "I was diagnosed with a NET in my liver, the source of the tumor is in..." + (show)

Welcome, Christine. You're not alone. I moved your message to this existing discussion:
- Newly diagnosed with NET in liver https://connect.mayoclinic.org/discussion/newly-diagnosed-with-net-in-liver/

I did this so you can read previous posts and connect easily with members like @sophiarose @mkmn @cu2 @pjsheridan2022 @jay1225 @hopeful33250 @spartan and others who have experience with NETs that has metasisized to the liver.

Christine, you asked about the monthly support group on Zoom. You can find more information by clicking EVENTS at the top of the website. But allow me to give you the direct link for the next meeting Oct 6. See here:
- Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-117/

I like the question you asked of members: "What is important to ask or know going into this surgery?" Is your surgery to remove part of the small intestine or to remove part of your liver, or both?

sophiarose | @sophiarose | Sep 15, 2022

Christine
I have learned so much from the Mayo Clinic support group
The most important information I learned is that to make sure you are fully aware of everything before you do anything
It is so important to have present and future knowledge of your situation
Good luck
Be well

Teresa, Volunteer Mentor | @hopeful33250 | Sep 16, 2022

In reply to @christine714 "I was diagnosed with a NET in my liver, the source of the tumor is in..." + (show)

Hello @christine714

I would like to join @colleenyoung and @sophiarose in welcoming you to Connect. I can so understand your wanting to have as much information as possible going to surgery. As I have had three surgeries for NETs in the upper digestive tract (duodenal bulb) I can remember how foreign it was to be diagnosed with a type of cancer that wasn't typical but rare.

I agree with @sophiarose that the more you know in advance, the better you will be able to cope with the upcoming surgery and treatment plan. The monthly support group is a great way to learn about NETs as well as meet with others who are traveling on this same journey. There are others in the group who also have liver METs and will gladly share with you. I have put you on the list to receive and invitation to the next support group in October. As it is a virtual support group, via Zoom, you can attend from any part of the country.

I look forward to hearing from you again. If you are comfortable sharing more, I'm wondering if there were symptoms that led to this diagnosis and what tests you had that confirmed the NETs?

harley4650 | @harley4650 | Sep 17, 2022

I have NET cancer of the liver it started in the small intestine tumor was removed from small intestine. now taking hormone shots {4} had a cat scan last week tumors got larger. Now they want to start pprt. UNDECIDED

Colleen Young, Connect Director | @colleenyoung | Sep 20, 2022

In reply to @harley4650 "I have NET cancer of the liver it started in the small intestine tumor was removed..." + (show)

@harley4650, I encourage you to read and ask questions in this related discussion as you consider whether to start PPRT or not:
- PRRT for NETs: Questioning whether I should continue or not https://connect.mayoclinic.org/discussion/prrt-for-nets/

char1962 | @char1962 | Sep 22, 2022

In reply to @harley4650 "I have NET cancer of the liver it started in the small intestine tumor was removed..." + (show)

Hi I was diagnosed with NET in my small intestines just like you in 2011 I had surgery and the plan was to monitor area to see if what was left would grow and fast forward 2022 my annual scans showed it had matastized to the liver and both ovaries so for 11 years it was inactive, I see now that it’s a slow growing tumor, now that I have multiple ones I’ve been getting the sandostatin monthly shot to prayerfully stop the progression or even shrink them , my oncologist said the tumor on liver wasn’t in a good spot to operate , your not alone keep the faith 🙏🏽

harley4650 | @harley4650 | Sep 24, 2022

I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks like it spread to the liver 3 spots i had 3 sandostatin shots monthly had a cat scan 2wks ago showing tumors growing larger, doctors want to start prrt next month, still have lots of diarrha and crams and gas from the surgery.Undecided on prrt need more information