My carcinoid tumor is inoperable: What are the best ways to control?

@panorman3: I hope your Oncologist has some experience with Neuroendocrine Carcinoid Cancer due to NET tumors need expert treatment at the most efficient time in tumor progression. I urge you to research NET disease and learn all you can. Through your biopsy/diagnosis you learn your KI67 %, Tumor Grade and the Stage of your disease. Many of our tumors are slow growing and symptoms are manageable. Ask if your tumors are “Functioning” or not, are “Well-differentiated” or not and the results of your 24hr Urine test. Ask for a 2nd Opinion from a specialist in your NET cancer field, they are the best dr to advise your treatments and manage your health.
Most of us receive Lanreotide shots every 28 days at your local Oncologist to control symptoms and may reduce tumor growth.
I hope this helps you on this unplanned, unexpected change in your health. The more comfortable you are knowing the details of your tumors, really helps you converse with your drs to make best treatment decisions. This is a rare disease - not similar to the other types of cancer!

@panorman3: I hope your Oncologist has some experience with Neuroendocrine Carcinoid Cancer due to NET tumors need expert treatment at the most efficient time in tumor progression. I urge you to research NET disease and learn all you can. Through your biopsy/diagnosis you learn your KI67 %, Tumor Grade and the Stage of your disease. Many of our tumors are slow growing and symptoms are manageable. Ask if your tumors are “Functioning” or not, are “Well-differentiated” or not and the results of your 24hr Urine test. Ask for a 2nd Opinion from a specialist in your NET cancer field, they are the best dr to advise your treatments and manage your health.
Most of us receive Lanreotide shots every 28 days at your local Oncologist to control symptoms and may reduce tumor growth.
I hope this helps you on this unplanned, unexpected change in your health. The more comfortable you are knowing the details of your tumors, really helps you converse with your drs to make best treatment decisions. This is a rare disease - not similar to the other types of cancer!

My carcinoid tumor is in the mesentery and cannot be operated on, i will know in the next few months how fast it is growing and what must i do, my doctor says prrt is overkill and i should take the shots.

I just started this same journey a couple of months ago. I chose not to do a redaction as it did not sound effective. I have been doing the shots for two months now without issue. I am also learning how my diet effects my system. I am much more comfortable living with this disease after reading the experiences of others. Thank you!

I'm glad that you found this forum, @nofire. I found support on Mayo Connect when I was facing my third surgery of the upper digestive tract and it gave me confidence that this is a chronic condition and one that others had lived through.

You mentioned that you are learning how diet affects you. Could you share more about that?

Hello @panorman3,

You are asking good questions. Some members of this group have had a reduction in the sizes of tumors and some have not. If you would like more information, please read the posts in the following discussion group,
--First Lanreotide Injection
https://connect.mayoclinic.org/discussion/first-lanreotide-injection/?commentsorder=newest&pg=4
What does your doctor say about this type of treatment?

i know it is in the mesentery why cannot surgeons not move aside the intestines and cut out the tumor. i have heard of operations that lay all the instestines outside of the body for and operation.

Since you are asking these questions, @panorman3, I would suggest getting a second opinion on your surgical options. I would suggest that this second opinion come from a NET specialist. They are not usually found at your local oncologist's office. Here is a listing of NET specialists from the Carcinoid Cancer Foundation's webiste, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. Mayo Clinic has three locations and they have NET speciaists at each location. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63..

You are seeking answers and you are being proactive about your care. This is great. I hope you are able to consult with a NET specialist. I look forward to hearing from you again. Will you post again and let me know how you are doing with this process?