Neuroendocrine Tumors (NETs) Support Group

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Hello, I was taking Everolimus 10mg for about 1 month then stopped when I became elegible...

https://connect.mayoclinic.org/comment/942523/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2023

@outlawcancer It was great to hear to you share your experience with your surgery. Would love...

https://connect.mayoclinic.org/comment/817467/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

I was diagnosed with NETs last year. My case is a bit unusual since it seems...

https://connect.mayoclinic.org/comment/804124/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

Hello @marilyn2525 I so appreciate the information you provided. I have had three surgeries for NETs...

https://connect.mayoclinic.org/comment/134694/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2019

Diagnosed in 2019 I’m now 65 have a pancreatic net that metastasis in the liver. Tumor...

https://connect.mayoclinic.org/comment/1110111/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2024

Jeannie, take a deep breath, you are among many of us that have gone down this...

https://connect.mayoclinic.org/comment/1068055/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2024

My wife has a multi-disciplinary team with a NET Specialist, and even after all the treatment...

https://connect.mayoclinic.org/comment/1056767/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

My husband has one tumor on his pancreas and “innumerable” lesions in his liver. They started...

https://connect.mayoclinic.org/comment/831010/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

Hi! I’m so sorry to hear about your husband’s diagnosis. I believe in asking as many...

https://connect.mayoclinic.org/comment/1201611/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 1 9:10am

I had a modified Whipple in 2015 for insulinomas x 2. 3 months later had more...

https://connect.mayoclinic.org/comment/1267600/

Discussion: Pancreatic Cancer: Anyone have liver metastasis after Whipple?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 26 7:37pm

i actually feel good since surgery. I have had check up every 6 months since surgery....

https://connect.mayoclinic.org/comment/1065049/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9, 2024

Hi, Did they do a PET scan ? I have stg 4 grade 1 Pnet and...

https://connect.mayoclinic.org/comment/902658/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2023

I did 6 months of chemo, every 2 weeks. I never heard of it shorting your...

https://connect.mayoclinic.org/comment/817375/

Discussion: NETs: Competing Pathologies--how to sort it all out?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

Teresa and @carcinoid, Dr Anthony told me the 24-hr urine test was not helpful for rectal...

https://connect.mayoclinic.org/comment/184538/

Discussion: Carcinoid Cancer and working

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2018

@smdoonan Your last sentence about consistently done at the same lab is probably the important factor....

https://connect.mayoclinic.org/comment/179374/

Discussion: CGA (Chromogranin) results from different labs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2018

Hello, I was diagnosed about 2 1/2 years ago, primary tumor was identified in the small...

https://connect.mayoclinic.org/comment/1317375/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31 2:20pm

Hello @physedr and welcome to the NETs support group on Mayo Connect. I am glad that...

https://connect.mayoclinic.org/comment/1076299/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

Thank you for sharing. my husband has P-NET. and was getting Sandostatin shots monthly, they gave...

https://connect.mayoclinic.org/comment/853060/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2023

Thanks for the reply Scott. I too am having a 6 mos post surgery follow up...

https://connect.mayoclinic.org/comment/847654/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2023

@kim1965 , I had similar surgery ( distal pancreatectomy, with gallbladder, spleen removal, some metastatic spots...

https://connect.mayoclinic.org/comment/817936/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 27, 2023

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