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Introduction: advanced stage NET
I’m new to this group. I’m 68 and I was diagnosed in January with stage 4, grade 1 neuroendocrine tumors. The primary tumor is on the terminal ilium, there is one metastasis on a nearby lymph node and many metastases in my liver.
I started having flushing of the face and ears in June 2025 which I mentioned to my PCP two months later but it didn’t ring any bells. I had diarrhea and urgency more than once a week going back maybe 15 years; I had mentioned to previous PCPs having a grumpy bowel, but no one followed up on it. I lived with it ok. In the fall of 2025, I started having diarrhea mostly continuously. In December I saw a NP in my PCP’s office. She ordered a lot of tests and referred me to a gastroenterologist specializing in irritable bowel disorder. This led to an abdominal CT, a liver MRI, needle biopsy and a diagnosis. I also had airway constriction about this time.
The local oncologist started me on lanreotide depot the beginning of February 2026. He said that surgery to prevent intestinal blockage or for debulking was not necessary. He said my prognosis was very good.
After two injections, the symptoms (diarrhea, flushing, airway constriction) were greatly improved , but did not fully resolve. The gastroenterologist prescribed colestipol for bile acid malabsorption and interventional radiologists did bland embolization on the liver tumors on April 20 (right side) and June 10 (left side).
During the procedure on June 10 (under sedation), I started flushing and sweating profusely and had a minor arrhythmia. I was sent home. I had severe diarrhea overnight, airway constriction the next day, and my stomach felt “wrong” so I couldn’t eat. I was sent to the emergency room. When I got there my systolic pressure was 183 and I triggered a sepsis protocol. Of course, I didn’t have sepsis, but understandably they had to rule that out. (The elevated temperature was from the flushing and the inflammation markers were from the embolization.) I was admitted to the hospital and was given 10 mL intramuscular octreotide four times per day and they checked my blood pressure every few hours. The blood pressure took a while to come down, but the other symptoms cleared quickly after the first injection. I was discharged after about 36 hours.
My local oncologist insists this was not a carcinoid crisis. I told him I no longer trusted him. I asked for and got referrals to NET specialists at Cedars-Sinai and UCLA Medical Centers. I saw a multidisciplinary team at Cedars-Sinai on August 28. Dr. A. Gangi recommended surgery. I saw Dr. S. Anand at UCLA on September 15. He largely made the same recommendation. I am arranging to have surgery at Cedars-Sinai in early November.
The tumor on the ileum needs to be removed (electively) now to preclude a future intestinal blockage and emergency surgery with people who can’t recognize a carcinoid crisis. If over 70% of the tumor mass can be removed, the debulking greatly improves my prognosis. Serotonin release from the liver tumors is causing liver fibrosis and this needs to be stopped. If the cancer outside the liver can be completely removed, I could be a candidate for a liver transplant.
I see Dr. Gangi at Cedars-Sinai again in two weeks.
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@whitebeard Hi and welcome to Mayo Connect. You have had quite the journey to get to this point of surgery. How are you feeling overall? What are you most concerned about moving forward?
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1 ReactionWhiteBeard
I am struck by your post as it feels somewhat familiar.
The attempt to explain symptoms followed by dismissal, to misdiagnose to a treatment without correct comprehension to finding a competent, compassionate NET medical team. Your post helps spread the word that NETs needs better Physician education so that diagnosis happens earlier. Patients need the community in order to learn how to self advocate in seeking a reliable NET specialist who has a tumor board. And that we support each other for strength and suggestions. Thank You and wishing you the best .
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4 ReactionsI'm sorry to hear of your diagnosis and the trouble you've had on this road so far. I agree that it does sound lke you went into carvinoid crisis during and after your procedure. As you've learned, there are specific protocols to be followed involving administration of octreotide prophylacticaly before during and after medical procedures to prevent that from occurring. But I'm so pleased that you've landed at Cedars with an excellent net team. We credit them with saving my husband's life 16 years ago when other specialists had written him off. We can personally strongly recommend surgeon Nicholas Nissen and Interventional Radiologist Marc Freedman. When my husband was a patient his oncologist was Dr Wolin but he has since moved to New York. We are now in Arizona and he is receiving excellent care at Mayo.
It's clear that you have a great handle on your care and are being your own best advocate by learning about this disease, holding providers accountable and seeking out the specialists that can give you the proper treatment. Keep that up!
I hope the surgery goes well! Please keep us posted.
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3 ReactionsMy thoughts are with you as you navigate through the maze! I had ileal NET surgery at 80 years old. Sections of both bowels and the valve were removed along with two affected and nearby lymph nodes through robotic surgery by a 32-year-old surgeon. I have applauded him daily over the past 17 months for the masterful job he did. Bowel movements are now "textbook quality", and better than at any point in my adult life. I wish you nothing but the best of fortune as you face what has to be a difficult junction in your life. As you can, please update all of us on your progress.
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3 Reactions@tomrennie
I actually feel quite good. I definitely feel much better than a year ago.
The two days I was hospitalized, I was on the cancer floor and it drove home that this cancer is not like others. I’m not going to die a slow lingering death.
But, I could die very quickly.
The carcinoid crisis could have been much worse. I was lucky this time.
I could have an intestinal blockage.
Or, less fast, I could have liver failure.
Surgery to eliminate those risks sounds like a good plan and easy choice.
Bruce
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5 Reactions@whitebeard For some of us with NETs, this cancer is like "others"? That slow lingering death that you describe is what we fight against every second of every day of our lives. I have been living on chemo for over four years. You should feel very fortunate.
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7 Reactions@tomrennie
And some of us do not relate to " fight" ..
but come to accept and live our lives in the present moment
still appreciating what we can and still creating good memories with/for our loved ones.
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11 Reactions@tomrennie
Gently, gently…
I was describing my experience, “I’m not going to.”
We each live our own experience. I’m am neither fortunate nor unfortunate that my experience is different than someone else’s experience.
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4 ReactionsHi @whitebeard, I’d like to add my welcome. I hope you get more clarity of next steps at your upcoming appointment.
I wonder if this related discussion might offer any additional insights or experiences related to yours.
- Any tips about Cytoreductive, debulking Surgery? https://connect.mayoclinic.org/discussion/cytoreductivedebulking-surgery/
I look forward to your update after your appointment next week.
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1 Reaction@jerrydanhuffman thanks for sharing about your surgery. My primary is in the terminal ilium and I’ve been told surgery isn’t recommended since I have metastasis to the liver and lymph nodes. I’ve wondered if resection would reduce diarrhea symptoms but worry that removing the Ileocecal valve would make diarrhea worse or cause other problems. Sounds like your bowel movements are vastly better. Any other thoughts or advice to add?
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4 Reactions