Neuroendocrine Tumors (NETs) Support Group

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Comments (1,498)

I was told by my Sutter Health docs that I had "benign gastric neuroendocrine carcinoid tumor,"...

https://connect.mayoclinic.org/comment/1172008/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

Happy to here you doing better , I just joined this group and it’s paying off...

https://connect.mayoclinic.org/comment/747593/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 9, 2022

Hi, 1 year ago I had surgery to remove two liver mets. My surgeon said that...

https://connect.mayoclinic.org/comment/758820/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2022

I'm being treated at IHC Oncology in Utah. My oncologist specializes in NETS and was educated...

https://connect.mayoclinic.org/comment/1167738/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4 7:10am

@osiejay26… I hope you have received results of your recent scans. Since I have NET with...

https://connect.mayoclinic.org/comment/805406/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2023

I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks...

https://connect.mayoclinic.org/comment/753325/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

Thanks for the feedback firepower. I also have grade 3 Ki67 of 42 and am looking...

https://connect.mayoclinic.org/comment/828496/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

@stevestenberg31 he did last week! Unfortunately not enough uptake of the tracer so PRRT is not...

https://connect.mayoclinic.org/comment/824943/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

I was dx in may with net in small intestine tumor was removed but pep scan...

https://connect.mayoclinic.org/comment/758557/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2022

4 nights in the hospital after the surgery. Eating mostly plant based diet plus fish. No...

https://connect.mayoclinic.org/comment/853249/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2023

Welcome, @amani79. Glad you joined us here. I am a moderator on this site, but on...

https://connect.mayoclinic.org/comment/163138/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2017

@k8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my...

https://connect.mayoclinic.org/comment/812349/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

Today I had a visit with my oncologist after the surgery. Original huge tumor of the...

https://connect.mayoclinic.org/comment/823714/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Hi. I also have NET starting in the lung. It has spread to liver and lymph...

https://connect.mayoclinic.org/comment/835071/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

Thank you for your reply. Where is Dr Lui located? So you received three opinions and...

https://connect.mayoclinic.org/comment/1145815/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22 8:18pm

Good morning, My NET is Pancreas to Liver also to numerous to operate, some were over...

https://connect.mayoclinic.org/comment/913398/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

My husband has neuroendocrine pancreatic cancer stage four in liver as well. He's been having trouble...

https://connect.mayoclinic.org/comment/796605/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2023

Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it?...

https://connect.mayoclinic.org/comment/669455/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2022

Hi Adding a five day SBRT radiation starting next week to hit one lesion in my...

https://connect.mayoclinic.org/comment/1025698/

Discussion: My husband has had his second PRRT and is doing well!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1 6:57pm

I get tested for Chromogranin every 4 weeks. My last result was around 1000. It had...

https://connect.mayoclinic.org/comment/793083/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2023