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

@razorsharp Waiting is never fun. My insurance will only cover scans at three months or longer. If I wanted them sooner, I had to pay out of pocket. Is your insurance similar?

I. Was dx’d with NETs of the sm bowel in 2014. Was told to find the best NET surgeon I could . I went to the University of Iowa, 100 cm of sm bowel removed by Dr. James Howe. Over the next few years I attended all the national conferences and learned a lot~! One takeaway was patients came and said they were inoperable. What I learned, it is the surgeon that often makes it inoperable and their abilities. Not knowing your situation, if it is still a concern, the above Doctor is the best, IMO, I am still here. Next is Dr. Eric Liu in Colorado. These 2 surgeons are able to handle most situations, even if the tumors are in the liver or near many blood vessels. This is their talent. I do not know your situation, but would highly recommend checking these docs out for second opinion. Always get second opinions.! Good Luck. Oh I am still no evidence of disease. 🙏🏻 it continues.

@theresaag You are 100% correct, only general surgeons usually state inoperable. Thank God for NETS Specialist Surgeons!

@panorman3
Maybe the problem isn’t access — it’s the risk involved:
1. Vital blood supply runs through the mesentery
• The superior mesenteric artery (SMA) and vein (SMV) are major blood vessels supplying most of the small intestine and part of the colon.
• A tumor might be wrapped around or invading these vessels.
• Cutting it out risks infarcting (killing) large sections of intestine.
2. Lymph nodes and cancer spread
• Many cancers involving the mesentery also involve lymph nodes and are already metastatic.
• Removing all affected tissue might mean removing so much bowel that the patient ends up with short bowel syndrome (not enough intestine left to absorb nutrients).

@fraaseo: Great explanation of mesentery cancer & surgical risks! You answered quandary for many NET patients like me who have primary tumor in small intestines. Thank you friend!

@fraaseo I live in Far North Qld Australia. I found out in 2021 I had net tumours in intestines and lymph nodes. One general surgeon said nah i cannot do anything then another one said I cannot guarantee i can get everything out but i will go in and try. In March 2022 this amazing surgeon went in and took 1.5m of my small bowel out mostly ileum and 10 lymph nodes. He is not a net specialist but he had research them and told me the risks involved. I now have liver lesions in which all are sub centimeters and he is monitoring them like a hawk. I can say yes he is a general surgeon but he spent 4.5 hours cutting out what was necessary and for now minus my liver lesions feel fine with no symptoms

@siluka That’s great! Glad it worked out for you.

yes lucky I found someone who was willing to operate. wishing everyone who battles with net tumours all the best the journey is a challenging one

@hopeful33250 itis in the mesentry middle of my intestines, am feeling fine iw ill know in November if it is growing and if i have to do something about it,
Thanks and GOD bless
also looking for a second opinion

@tomrennie not sure