GI Net stage 4 advanced: Is it incurable?

I was diagnosed with stage 4 advanced NET s primary in the small bowels, and metastasized to the liver, approx 16 tumors, largest being 2.8.. Started Lanreotide, injections but unfortunately that didn’t help with the hot flashes (I also have carcinoid syndrome) . Switched to ocreotide, and I’ve been on those injections for over a year. So far there are no new tumors, but 3 show signs of growth.. I’m scheduled for a PET, in august to determine if we continue to monitor or start Lutathera treatments.. I am seeing a NET specialist at Mayo Jacksonville. I was also told it’s incurable, but it can be controlled.. You will find many people on this site with the same diagnosis but different treatments.. Best wishes.

I’m so sorry you’re going through this. I know it’s scary and there’s so much to process but please know you’re not alone. My husband was diagnosed with pancreatic net, stage 4 16 years ago and is still here and living life.
I’ve learned a lot over the years and I’d like to try to give you some guidance. This is long and I apologize in advance.
First and most important, please find a net specialist to treat you or at least consult with (some, such as Dr Liu in Denver will do a Telehealth consult.) A specialist is crucial as this is still considered a fairly rare disease and a general oncologist usually does not have the required knowledge to determine the best course of treatment and, very important? The sequencing of the treatments. If you can’t see a specialist for a treatment, many specialists will consult with your local oncologist to help guide the treatment. You can find a list of net specialists by state at Find An NET Specialist | NET Support Groups
Second, educate yourself on this disease. You have to become your own best advocate and know enough to be able to gauge if what your doctor is telling you or suggesting to you makes sense. Even if you see a specialist. I learned this early on when a specialist rejected all forms of treatment and told my husband to get his affairs in order. I knew she was wrong and found a new specialist and my husband is still here as a result of that knowledge.
There is a lot of great information and videos out there. Here’s some links
https://netrf.org
https://www.carcinoid.org/
https://nanets.net/
Third - don’t be afraid to ask questions of your doctor. That’s part of having the needed knowledge.
Come here and ask questions. There’s lots of people here with h a long history and can help guide you. There are also other forums on social media that are very good for guidance that you can explore.
Lastly, take a deep breath. There are more treatment options than ever right now and more in development all the time. I’ll tell you what our specialist (who saved his life) told us. This can be a chronic disease that can be treated. Not cured, but treated to provide a long productive life.
Have trust in God and he’ll guide you on this new journey.

Hello @lovemyfamtopieces72 and welcome to the NETs Support Group on Mayo Connect. I see that two members of the NETs group have already shared their experiences with you. First of all let me say, that you are wise to be looking for information and encouragement. Mayo Connect is a great way to learn from the experiences of others who have lived with this for a number of years.
I started my journey with NETs in 2003, when I had my first surgery, and my third surgery was in 2016. As you can see from some of our experiences NETs is often a slow growing type of cancer and folks often live a long time with it. While there might not be cures for all NETs there are certainly lots treatment options that often can help slow down or shrink the NETs as mentioned in the above posts.

I would like to emphasize what both @vinnie694 and @lindabees have already recommended, that it is important be to consult with a NET specialist. NET specialists have a greater awareness of this rare form of cancer and have a good understanding of the many treatment options that are available. If you don’t live near a NET specialist, you can often schedule a virtual appointment. Mayo Clinic has NET specialists at all three of their locations. Here is a link you can follow in order to obtain either a virtual or in-person appointment http://mayocl.in/1mtmR63. If for any reason you cannot be seen at a Mayo facility, here is a worldwide listing of NET specialists, Find A Doctor - Carcinoid Cancer Foundation.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
As you share a little more about yourself and your current treatment, I will introduce you to other members also being treated in the same way. You said in your post, “I’m doing targeted injection.” I’m wondering if you could share the name of the injections. Are these targeting the NETs in the liver?

I look forward to hearing from you again. Will you continue to post with your questions and concerns?

My heart goes out to all of use!!
Dealing with NETs is a struggle
I have was diagnosed in 2019 I did a liver resection and was ok for a year and half
I have had 3 different options all my NET specialists
“Never take 1 doctors option”
I am on my 5th different procedure
I am determined to not let it win
Just last Monday I wanted to throw in the towel when I was told it might have metastasized to my skull
But Wednesday I will get MRIs done and deal with the outcome once again
NEVER look back
NEVER forget
ALWAYS ask questions
YOU have to be in control
Know you body and hold on tight it is one rocky road
Good luck all