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.

gmapam | @gmapam | Dec 31, 2023

I went out of NETWORK and the area to get a second opinion from a NET Lung Oncologist at Cedar- Sinai . I just had to get my pcp on board and to advocate for me! I had a well defined NET in the middle love of my right lung.
Yesterday I left the hospital cancer free after a thorascopic lobectomy . Today I became a greatgrandma for the first time🥰

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 1 3:24pm
In reply to @gmapam "I went out of NETWORK and the area to get a second opinion from a NET..." + (show)
@gmapam

I went out of NETWORK and the area to get a second opinion from a NET Lung Oncologist at Cedar- Sinai . I just had to get my pcp on board and to advocate for me! I had a well defined NET in the middle love of my right lung.
Yesterday I left the hospital cancer free after a thorascopic lobectomy . Today I became a greatgrandma for the first time🥰

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What a great story to share in this discussion, @gmapam. Congratulations on becoming a great grandmother!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 2 7:53am
In reply to @kgrear "Thank you kindly." + (show)
@kgrear

Thank you kindly.

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Hello @kgrear,

As Colleen mentioned, Mayo Clinic hosts monthly NETs support group meeting. Our next meeting will be this Thursday, January 4. This month there will be a guest speaker, Dr. Richard Taylor, Oncologist and Palliative Care, Cancer-Related Pain. Here is a link that will provide you with more information on how to register in order to obtain the Zoom link,
https://connect.mayoclinic.org/comment/987564/
I hope to see you there!

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1 reply
kg | @kgrear | Jan 2 9:32am
In reply to @hopeful33250 "Hello @kgrear, As Colleen mentioned, Mayo Clinic hosts monthly NETs support group meeting. Our next meeting..." + (show)
@hopeful33250

Hello @kgrear,

As Colleen mentioned, Mayo Clinic hosts monthly NETs support group meeting. Our next meeting will be this Thursday, January 4. This month there will be a guest speaker, Dr. Richard Taylor, Oncologist and Palliative Care, Cancer-Related Pain. Here is a link that will provide you with more information on how to register in order to obtain the Zoom link,
https://connect.mayoclinic.org/comment/987564/
I hope to see you there!

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I will absolutely attend. I am so grateful for this support group, not to mention its guest speakers.

Thank you ever so much! 🙂

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anxious88 | @anxious88 | Apr 20 4:55am
In reply to @kgrear "Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It..." + (show)
@kgrear

Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It has metastasized to my liver.

So kind of you to ask. Are the support groups available in person at Mayo Jax? I was thinking it would be good for me to attend. I could use the support of meeting others who have NET tumors.

Happy holidays to you! 🙂

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Can I ask you how were you diagnosed?

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1 reply
kg | @kgrear | Apr 20 3:14pm
In reply to @anxious88 "Can I ask you how were you diagnosed?" + (show)
@anxious88

Can I ask you how were you diagnosed?

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I had a bleeding issue when I went to the bathroom. They ran a bunch of tests, but gave me a clean bill of health. I persevered (somehow, I just knew something was wrong), and a barium test showed a tiny tumor. However, I didn’t realize it was stage four until I received a specialized scan at Mayo Clinic in Jacksonville. It shows exactly where the cancer is. Devastating diagnosis, but also so good to know where you stand, to be certain instead of second-guessing, and to change your entire world view to focus on making your life the absolute best it can be. I have renewed meaning and purpose. I am actively reconnecting with my spirituality.

Now please share more about YOU. 😊

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1 reply
anxious88 | @anxious88 | Apr 21 2:08am
In reply to @kgrear "I had a bleeding issue when I went to the bathroom. They ran a bunch of..." + (show)
@kgrear

I had a bleeding issue when I went to the bathroom. They ran a bunch of tests, but gave me a clean bill of health. I persevered (somehow, I just knew something was wrong), and a barium test showed a tiny tumor. However, I didn’t realize it was stage four until I received a specialized scan at Mayo Clinic in Jacksonville. It shows exactly where the cancer is. Devastating diagnosis, but also so good to know where you stand, to be certain instead of second-guessing, and to change your entire world view to focus on making your life the absolute best it can be. I have renewed meaning and purpose. I am actively reconnecting with my spirituality.

Now please share more about YOU. 😊

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Thank you! Sorry for my english, I am spanish. Can I ask you how old were you when you were diagnosed? I am only 35 and I am terrified. I am waiting for a DOTATOC scan next week, they are looking for an appendiceal/ileum tumor. I just think I will be stage 4 as my Chromogranin A levels are elevated 🙁

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1 reply
kg | @kgrear | Apr 21 2:23am
In reply to @anxious88 "Thank you! Sorry for my english, I am spanish. Can I ask you how old were..." + (show)
@anxious88

Thank you! Sorry for my english, I am spanish. Can I ask you how old were you when you were diagnosed? I am only 35 and I am terrified. I am waiting for a DOTATOC scan next week, they are looking for an appendiceal/ileum tumor. I just think I will be stage 4 as my Chromogranin A levels are elevated 🙁

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I was 59 when I was diagnosed and 60 when I found I was at stage four. You are very young. I know waiting is hard, but let’s wait to see what the doctor says. Do you mind if I ask where you live, in what city?

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1 reply
anxious88 | @anxious88 | Apr 21 2:54am
In reply to @kgrear "I was 59 when I was diagnosed and 60 when I found I was at stage..." + (show)
@kgrear

I was 59 when I was diagnosed and 60 when I found I was at stage four. You are very young. I know waiting is hard, but let’s wait to see what the doctor says. Do you mind if I ask where you live, in what city?

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Yes, of course. I live in Pamplona, in the north of Spain

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kg | @kgrear | Apr 21 3:05am

I am in Florida. I feel lucky to be so close to Mayo Clinic. They do an excellent job.

Please remember that people can live many years with carcinoid cancer. They are working on finding a cure and are making progress. A carcinoid cancer diagnosis is not a death sentence. Stay hopeful.

Please keep me posted. I know I’m a world away, but please let me know if I can help. Best wishes!

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