1. < Neuroendocrine Tumors (NETs)

Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Posted by anet782x @anet782x, Jul 22, 2023

Hello All

I just discovered this NETS support group and happy to be here. I am recently diagnosed with NETS in small bowel which was misdiagnosed as enlarged lymph node or kidney stones at local hospital. I have since had biopsy, pet scan and MRI, CT to confirm diagnosis and pathology has it as grade 1-2 with lymph node involvement & primary tumor located but at time of biopsy, they didn't know it existed. I am scheduled for Laparoscopic Possible open surgery for small bowel resection and mesenteric mass resection in one week from today. I am concerned that the hospital in my network does not do these types of surgeries on the regular and after reading many of the posts I am questioning everything. I am unfortunately not in network with Mayo in Jacksonville and my network does not include any providers that have a Multidisciplinary Team dedicated to NETS. Any thoughts appreciated on how I can move forward out of being frozen with fear that I'm making huge mistake going forward to this surgery.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

ricki8 | @ricki8 | Aug 30, 2023

Thanks for this information and yes, I would like to join in.

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fae | @fae | Sep 2, 2023

Having your surgery done by a surgeon who is not familiar with NETS does not mean that s/he is not an excellent surgeon who has done many bowel resections and mesenteric node resection. But I would want an oncology consult before the surgery because if they are going to use lanreotide for treatment after surgery they need to remove your gall bladder. My biggest concern would be the pathologist who will determine if they have clean margins when the resection is done and the pathologist who will make the diagnosis. If you can not be treated by someone who has experience with NETs it would be a good idea to request that your pathology slides be sent for a second opinion. You can send CDs of your scans to NIH and they will review them free of charge and will do a telehealth visit with you but it will take 3-5 months for them to review and get back to you. It is an option for some further information. Wishing you he best possible outcomes.

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ricki8 | @ricki8 | Sep 8, 2023

Hi Teresa aka @hopeful33250
Thank you so much for the suggestion. It was an excellent experience and the guest Oncologist was superb, answering all questions. I would highly recommend joining this support group.
❣

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 8, 2023
In reply to @ricki8 "Hi Teresa aka @hopeful33250 Thank you so much for the suggestion. It was an excellent experience..." + (show)
@ricki8

Hi Teresa aka @hopeful33250
Thank you so much for the suggestion. It was an excellent experience and the guest Oncologist was superb, answering all questions. I would highly recommend joining this support group.
❣

Jump to this post

@ricki8

I'm so glad that you could join the meeting. Yes, Dr. Starr is an incredible resource for NETs patients. I'm glad that you had some questions answered. This group meets on the first Thursday of each month with different guest speakers who are all very knowledgeable.

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ricki8 | @ricki8 | Sep 8, 2023

So looking forward to each of the 1st Thursdays. And...sorry, I didn't realize you were there, I would have said hi.

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1 reply
breezygirl | @breezygirl | Sep 9, 2023

Could I get contact information about the group meetings every Thursday, please?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 9, 2023
In reply to @breezygirl "Could I get contact information about the group meetings every Thursday, please?" + (show)
@breezygirl

Could I get contact information about the group meetings every Thursday, please?

Jump to this post

Hello @breezygirl

Sure, the monthly group meetings are always on the first Thursday of each month. Often there are NETs specialists who do a presentation and a Q&A. However, occasionally it is, what I refer to, as an open-mike meeting. Where the members of the group (usually between 20 and 30) just share among themselves, ask questions and get patient-to patient feedback.

Watch the NET group discussions as it will be posted (usually on the Monday before the meeting). It is a virtual meeting, via Zoom, and is from 5:30 to 7 p.m. EST. It originates from the Mayo Clinic in Jacksonville, FL.

I would love to have you join us!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 9, 2023
In reply to @ricki8 "So looking forward to each of the 1st Thursdays. And...sorry, I didn't realize you were there,..." + (show)
@ricki8

So looking forward to each of the 1st Thursdays. And...sorry, I didn't realize you were there, I would have said hi.

Jump to this post

It was great that you could attend! We will say, "hi", at the next meeting.

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spinhead | @spinhead | Sep 19, 2023

Are you having the surgery at the same hospital that misdiagnosed? Surgery is always the best line of treatment if possible from what I’ve learned. I had a tumor taken off my liver two years ago but still have the cancer in my intestines. I strongly suggest you get a 2nd opinion from Mayo Clinic. Even if you can’t physically go there they can examine all your medical records and give an expert opinion. In any case, all Gods blessings to you

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