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.

Turkey | @tomrennie | Aug 22, 2023
In reply to @ricki8 "I am in the learning/discovery stage, so I will ask my Oncologist about those numbers. I..." + (show)
@ricki8

I am in the learning/discovery stage, so I will ask my Oncologist about those numbers. I appreciate any info you pass my way.

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Please ask questions here. I officially have had my cancer for a year. I was diagnosed 8/22/22. I learned so much here. Is your oncologist a NET specialist?

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1 reply
ricki8 | @ricki8 | Aug 22, 2023
In reply to @stevestenberg31 "How old are you? Why is surgery not an option ? Im 55yr old male. I..." + (show)
@stevestenberg31

How old are you? Why is surgery not an option ? Im 55yr old male. I was diagnosed with the same January 2023. I started Somatuline 2/15. I went to the ER 4/20 bloated and in pain. B/c the SINET was blocking my SI I had SI resection, 2.5cm NET, the GB, and 8 lymphnodes removed. I feel great now and gained 15lbs since. Im exercising daily etc.. The NETs in the liver haven't changed, im being told after 2 subsequent MRIs. Hang in there🙏.

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I am a senior and I might benefit from Cryoablation, but my NET surgeon said that normal surgery can possibly spread the cancers as they are connected to my lymph nodes etc. As we are all different and many of the NETs are in hiding, this is like war where a strategy is so very important. I am happy for you that you are having success.

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ricki8 | @ricki8 | Aug 22, 2023
In reply to @tomrennie "Please ask questions here. I officially have had my cancer for a year. I was diagnosed..." + (show)
@tomrennie

Please ask questions here. I officially have had my cancer for a year. I was diagnosed 8/22/22. I learned so much here. Is your oncologist a NET specialist?

Jump to this post

Hey, happy anniversary (if that can apply). Hopefully, you have many many more.
Yes, both my surgeon & oncologist specialize in NETs. I am also in a Clinical Trial related to the same. I am in Vancouver, Canada and my Oncologist trained at a Mayo Clinic in the States. I hear they are making headway for NETs in Israel - I hope they all share.

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1 reply
willam | @willam | Aug 23, 2023
In reply to @taneall "Here is an example as to why a NET specialist is necessary. My husband had an..." + (show)
@taneall

Here is an example as to why a NET specialist is necessary. My husband had an emergency hernia repair that the surgeon on call at the ER happened upon a small tumor in the small intestine that he removed and resectioned the SI. It was NET primary source. We then got a NET specialist both oncology and a surgeon. CT, PET, Blood work lots of research on the cancer. It had metastisized to the liver and lymph nodes. Surgery was done to resection the liver and remove lymph nodes, part of the surgery they removed his entire small intestine to FEEL for other tumors. 5 more tumors were found on the outside of the SI, 2 feet removed and resectioned. They did not show up on any scan, too small. I am not confident a surgeon not familiar with NET would do that. Just our experience. Also, look into the NET research foundation. They have lots of information and videos on the cancer. It helped us to get educated about it. It's a journey! Hoping for a good outcome for you.

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Hi,

who was your surgeon that felt for other tumors. They can't find my primary.
thank you

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Turkey | @tomrennie | Aug 24, 2023
In reply to @ricki8 "Hey, happy anniversary (if that can apply). Hopefully, you have many many more. Yes, both my..." + (show)
@ricki8

Hey, happy anniversary (if that can apply). Hopefully, you have many many more.
Yes, both my surgeon & oncologist specialize in NETs. I am also in a Clinical Trial related to the same. I am in Vancouver, Canada and my Oncologist trained at a Mayo Clinic in the States. I hear they are making headway for NETs in Israel - I hope they all share.

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Thanks. It is a happy anniversary. I have survived my first year of pancreatic cancer with help from folks here. I plan to have many more.

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1 reply
ricki8 | @ricki8 | Aug 24, 2023

It's so great to have these connections.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 24, 2023
In reply to @tomrennie "Thanks. It is a happy anniversary. I have survived my first year of pancreatic cancer with..." + (show)
@tomrennie

Thanks. It is a happy anniversary. I have survived my first year of pancreatic cancer with help from folks here. I plan to have many more.

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Congratulations on your first year surviving pancreatic cancer, @tomrennie! You have provided a lot of encouragement and support to others here and I'm glad that you have received help as well.

It's always great to celebrate anniversaries like this. 🎶

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1 reply
Turkey | @tomrennie | Aug 24, 2023
In reply to @hopeful33250 "Congratulations on your first year surviving pancreatic cancer, @tomrennie! You have provided a lot of encouragement..." + (show)
@hopeful33250

Congratulations on your first year surviving pancreatic cancer, @tomrennie! You have provided a lot of encouragement and support to others here and I'm glad that you have received help as well.

It's always great to celebrate anniversaries like this. 🎶

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Yaaaay! Thank you so much.

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Turkey | @tomrennie | Aug 25, 2023
In reply to @ricki8 "It's so great to have these connections." + (show)
@ricki8

It's so great to have these connections.

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These connections helped save my life.

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willam | @willam | Aug 25, 2023
In reply to @taneall "Here is an example as to why a NET specialist is necessary. My husband had an..." + (show)
@taneall

Here is an example as to why a NET specialist is necessary. My husband had an emergency hernia repair that the surgeon on call at the ER happened upon a small tumor in the small intestine that he removed and resectioned the SI. It was NET primary source. We then got a NET specialist both oncology and a surgeon. CT, PET, Blood work lots of research on the cancer. It had metastisized to the liver and lymph nodes. Surgery was done to resection the liver and remove lymph nodes, part of the surgery they removed his entire small intestine to FEEL for other tumors. 5 more tumors were found on the outside of the SI, 2 feet removed and resectioned. They did not show up on any scan, too small. I am not confident a surgeon not familiar with NET would do that. Just our experience. Also, look into the NET research foundation. They have lots of information and videos on the cancer. It helped us to get educated about it. It's a journey! Hoping for a good outcome for you.

Jump to this post

Hi,

I was hoping you could share the name of your husband's surgeon. They can't find my tumor/s on scans but know I have one/s. I would be so grateful. I have a young child and have already battled breast cancer and a nonmalignant brain tumor. I am looking for excellent doctors like your husband surgeon to proceed with.
thank you so much

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