Looking for a surgeon for carcinoid tumor in the mesentery

@tomrennie Thanks. Yes, my research is usually through Mayo or PubMed, etc.

I did have a biopsy. Came up well differentiated, Ki-67 <3%, Grade 1. Of course we know Grade 1 does not equal Stage 1. So that is yet to be seen. I'm so glad you're doing much better. I've been having GI symptoms, which prompted the colonoscopy that found the SBNET, but not seriously ill. It's possible my tumor is functioning, though. I'm getting a cardiac workup to see if my heart has been affected.

@tomrennie Hi Tom, I am so grateful to God for placing Dr. Younan in my path. My ongologist referred me to him. The other doctor was a general surgeon and did not have the specialize experience as Dr Younan. Dr. Younan is an oncologist surgeon who specializes in complex abdominal surgeries, to include whipples. He's accustom to operating in the mesentery area.

@taly Another good good resource is the Neuroendocrine Cancer Foundation. Here is the link to their website: https://www.ncf.net/

Your Ki-67 of <3% is good. You are correct though. A Grade 1 doesn't equal a stage one. Kudos to you for addressing your GI issues as quickly as you did. I agree that your symptoms may be a clue that your tumor is functional. It is good to play it safe with a cardiac workup. I just had one myself. It is precautionary as a long term chemo patient. The scan will help determine your next steps. I hope it confirms what you already know and nothing else. Scanxiety is real, when waiting for the results. Have you signed up to the Mayo Clinic patient portal yet?

@rogerstc Good for you for advocating for yourself. You found a surgical specialist that could address your needs. And, he addressed them with positive results. That's fantastic. Congrats to you.

Great information, I was diagnosed 1.5 years ago with Stage 4 Grade 2 tumors in my mesentery. After discussing things with the surgeon, I declined to do the redaction as he said he wasn't sure he could even get it or may not be able to get all 3 tumors. I had the quality of life versus quantity of life with my family to make my decision. I am being treated with Octreotide monthly and all scans have continued to show no changes. I appreciate all the information as my situation may change and I may need that specialist for the mesentery surgery. Best wishes to all on this "adventure".

@tomrennie I love the coined term Scanxiety. If someone thought that up, maybe you?, it means people experience it. That's comforting. I have people who love me who come undone if I mention I'm kinda scared. I find "Oh, yeah, that's normal," to be more helpful.

I started a new thread about being a newbie here. I so appreciate your welcome!

@tomrennie

How many scans should be done? I don't have anxiety about any scan. I only worry about what the scan might reveal. I had a routine annual CT-scan without contrast to monitor my kidney stones in 2025 which reported that there might be a SBNET in there. I thought all the labs they checked were over the top ... many hormones levels were "not good." A Dotatate Pet scan confirmed what was already suspected. A NET surgeon wanted a CT-scan with contrast prior to surgery but it was erroneously read as no evidence of SBNET. The NET specialist said there was evidence of a SBNET on all the CT-scans done since 2020.

The NET surgeon wants another CT-scan with contrast in November. The NET specialist also wants it done in November to see if Lanreotide is working. Another Dotatate scan early next year is also in the works.

Is metastatic mesenteric lymph nodes the same as mesentery involvement? There is also one distant metastatic site that lit up on the Dotatate.

Surgery is being recommended but I don't like that option. Surgery sounded like it might be "extensive" when they told me the list of things they might have to remove. Surgical anxiety is my thing especially without knowing precisely what all they might remove. I'm considering surgery but the following link makes me want to wait to see what lanreotide does.
https://pubmed.ncbi.nlm.nih.gov/35639999/
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The entire article is here:
https://academic.oup.com/jcem/article/107/12/3209/6594172
There is too much to digest especially since there is a concern that I will have a small bowel obstruction.

@dadcue, you're asking great questions that you should also discuss with your team. How many scans are required will differ from person to person depending on the patient's unique set of circumstances such as findings on previous lab tests and scans, treatments, disease progression, general health status, age, personal preference, etc.

I'm not a doctor, but here is my understanding regarding your question about mesentery involvement. Metastatic mesenteric lymph nodes are related to, but not the exact same as, general mesentery involvement. Metastatic mesenteric lymph nodes mean cancer cells have spread specifically to the lymph nodes inside the tissue that holds your intestines. Mesentery involvement is a broader term that can mean cancer is in those lymph nodes, or spreading directly through the fatty tissue and blood vessels of the mesentery itself. Your cancer team can determine if you have spread only to the lymph nodes in the area or to the mesenery itself.

As you navigate this challenging time of gathering as much information as possible, it can be overwhelming as well as helpful. Working with your cancer specialists to determine what information is applicable to you is an important step as you piece everything together. There's no one size fits all or any clear cut answers (unfortunately).

You should look into Dr. Doug Evens in WI He is a pancreas surgeon and vascular surgeon at Froedtert WI