Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph...

https://connect.mayoclinic.org/comment/1048688/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

My oncologist has prescribed lanreotide but I haven’t started as my surgeon suggested I wait for...

https://connect.mayoclinic.org/comment/1033760/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2024

Last week was diagnosed with Neuro endocrine tumor "nodules.". It is referred as! Biopsy of carcinoid,...

https://connect.mayoclinic.org/comment/1021964/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2024

William, I can not answer that. Not a physician and not licensed to practice medicine anywhere...

https://connect.mayoclinic.org/comment/971699/

Discussion: Anyone had nauseous, gas burping as symptoms for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2023

I was diagnosed with Carcinoid tumor in Feb 2023. My Chromogranin A blood count had hit...

https://connect.mayoclinic.org/comment/929310/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2023

I had a FNAC biopsy on a similar sized tumor in the same place. No one...

https://connect.mayoclinic.org/comment/903890/

Discussion: 1.7 cm Pnet recently found. Is a biopsy pretty standard protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 2023

Many things go into this kind of decision. How old are you? Are you symptomatic? If...

https://connect.mayoclinic.org/comment/903857/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

PET came back tumors both adrenals and cysts on kidneys. Urine rest was Meg. Awaiting new...

https://connect.mayoclinic.org/comment/903643/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

Pippa05, I am so very sorry to hear about your struggles. And I appreciate and can...

https://connect.mayoclinic.org/comment/897706/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2023

What areas of your body did they scan? Neck to pelvis? A Ga Dotatate PET-CT is...

https://connect.mayoclinic.org/comment/893208/

Discussion: SDHB Positive and Ga-68 Dotatate Scan question.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2023

I’m tired. No cancer diagnosis. Lots of cancer in my family… mom, aunt, grandma and my...

https://connect.mayoclinic.org/comment/882282/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

A chromogranin level of 1800 is quite high and taking account your blood pressure and a...

https://connect.mayoclinic.org/comment/882106/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

Hello @peg152 and welcome to Mayo Connect. Your concern is certainly understandable. The strange thing about...

https://connect.mayoclinic.org/comment/880986/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

I am presently in Japan and will be meeting with my oncologist the day after I...

https://connect.mayoclinic.org/comment/840491/

Discussion: Prostate Cancer with Neuroendocrine involvement found on pathology

Support Group: Prostate Cancer

Posted: Apr 9, 2023

@amyn1616, I've added your question to the Autoimmune Diseases support group as well as the NETs...

https://connect.mayoclinic.org/comment/831799/

Discussion: Is there a link between Autoimmune & Neuroendocrine conditions?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

I mand hopes et with an oncologist yesterday. My report: Small tumors in pelvic/abdominal region and...

https://connect.mayoclinic.org/comment/812958/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2023

Hello @kellysg and welcome to the NETs discussion group on Mayo Clinic Connect. I appreciate your...

https://connect.mayoclinic.org/comment/809280/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2023

My husband has had high chromagranin A for years. They think from neuroendocrine cancer but have...

https://connect.mayoclinic.org/comment/802160/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

@terlato I was also diagnosed with POTS my recent emergency laparoscopy showed intestines adhesions and more...

https://connect.mayoclinic.org/comment/797793/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

Many thanks for your concise response - I am posting on behalf of my wife Sharon:...

https://connect.mayoclinic.org/comment/792326/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

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