Neuroendocrine Tumors (NETs) Support Group

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Comments (1,780)

Yes, a support group would be good even if you connected with them by email or...

https://connect.mayoclinic.org/comment/101986/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11, 2016

when I was dx'ed initially we were living in north central North Dakota. It was a...

https://connect.mayoclinic.org/comment/85535/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2015

Living with NET with symptoms of flushing,diarrhea, tremors and profuse sweats. Had radiation chemotherapy and now...

https://connect.mayoclinic.org/comment/1196770/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 25, 2024

It depends on where you live .

https://connect.mayoclinic.org/comment/1158453/

Discussion: Merkel Cell Carcinoma: I'd like to hear from others

Support Group: Melanoma & Skin Cancer

Posted: Oct 17, 2024

Welcome, @mrsdit. Indeed. To help you meet other members living with merkel cell carcinoma, I moved...

https://connect.mayoclinic.org/comment/1073748/

Discussion: Merkel Cell Carcinoma: I'd like to hear from others

Support Group: Melanoma & Skin Cancer

Posted: May 24, 2024

Thanks so much! I’m going to look at one respite care/assisted living facility this weekend -...

https://connect.mayoclinic.org/comment/1074103/

Discussion: What’s the best care option for live alone senior during radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 24, 2024

Most people have replied about CgA. I live in Uk and have grade 1, small bowel...

https://connect.mayoclinic.org/comment/1091150/

Discussion: What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2024

It is my understanding that you need to understand the cellular structure of the problem and...

https://connect.mayoclinic.org/comment/772407/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

Hi vtn There are a lot of people that have had no additional growth or metastatic...

https://connect.mayoclinic.org/comment/859181/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2023

I have this condition also. Are you having symptoms? How was this discovered? It seems everybody's...

https://connect.mayoclinic.org/comment/1203938/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4 4:54pm

I throw blankets and tops on and off. I live by myself so when I am...

https://connect.mayoclinic.org/comment/1203844/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4 2:35pm

Thank you for the helpful links! We’d love a second opinion and all the support we...

https://connect.mayoclinic.org/comment/1197999/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

I'd like to expand on info from @lindabees: Depending on the state and county in which...

https://connect.mayoclinic.org/comment/1184968/

Discussion: Disability and Medicare: Has anyone qualified for Medicare under 65?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 2024

Hello @wilhelm and welcome to Mayo Connect. I appreciate your thoughtful comments about this rare disorder...

https://connect.mayoclinic.org/comment/1165843/

Discussion: Anyone have a paraganglioma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2024

I’m so sorry you’re going through this. I know it’s scary and there’s so much to...

https://connect.mayoclinic.org/comment/1112706/

Discussion: GI Net stage 4 advanced: Is it incurable?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2024

I have the same problem as you and always have low blood sugar syndrome. I tried...

https://connect.mayoclinic.org/comment/1088375/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2024

Hi @dipnech67 I would be happy to speak with you. I just sent you a private...

https://connect.mayoclinic.org/comment/1055386/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

Gig666, I am somewhat appalled that your docs didn't give you more options rather than just...

https://connect.mayoclinic.org/comment/1054944/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

Thank you for getting back to me. UMASS. Net specialist are not helpful. 74 yrs old,...

https://connect.mayoclinic.org/comment/1054704/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

From reading through the postings you may want to visit Ronny Allen’s website. He lives in...

https://connect.mayoclinic.org/comment/1046292/

Discussion: Atypical carcinoid tumour of the lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2024

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