Neuroendocrine Tumors (NETs) Support Group

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Comments (269)

Hi, thank you! Yes, I do intend to address all my side effect issues with the...

https://connect.mayoclinic.org/comment/1103497/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2024

Hi @aclanton @terradean My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun...

https://connect.mayoclinic.org/comment/1076548/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

EmilyFaith, l can hear your fear in your words. My question is do you have a...

https://connect.mayoclinic.org/comment/1062216/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

@jball77 You might consider messaging your surgeon through the patient portal to see if breathing exercises...

https://connect.mayoclinic.org/comment/1057641/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2024

I was recently diagnosed with NETs in my lungs, small ones. I had the all mighty...

https://connect.mayoclinic.org/comment/1054468/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

Hi @grec I shared my details earlier in the thread if you want to scroll back....

https://connect.mayoclinic.org/comment/1048486/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

I have had nodules in has of lu mgs 6+ years, scanned for 4 years, then...

https://connect.mayoclinic.org/comment/1030562/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2024

77 years old, female, no symptoms still being diagnosed. Tumor in left lower lung and left...

https://connect.mayoclinic.org/comment/1022376/

Discussion: Carcinoid tumor right middle lobe.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

Welcome, @lchaney1951. I moved your question to the Neuroendocrine Tumors (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ where...

https://connect.mayoclinic.org/comment/1022343/

Discussion: Carcinoid tumor right middle lobe.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

@mlbschuler @grec I have both DIPNECH and lung NETs and yes, it is scary to have...

https://connect.mayoclinic.org/comment/1004928/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2024

What I did was to do a deep dive into the process. First I set my...

https://connect.mayoclinic.org/comment/1000033/

Discussion: Possible NET: Waiting for the endo appointment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

@lcbrazen100 I just stopped my AI this last July after 5 years...doctor wanted me to go...

https://connect.mayoclinic.org/comment/984628/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 21, 2023

@pamelasantacruz I'm just over 5 years now since diagnosis, chemo, radiation, and two surgeries (lumpectomy for...

https://connect.mayoclinic.org/comment/968340/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

@mcohan Most doctors, even radiologists, pulmonologists and oncologists haven't even heard of DIPNECH. I recently went...

https://connect.mayoclinic.org/comment/965599/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

Tom, that’s frustrating about your incidental findings too. I hope both conditions were successfully treated. I...

https://connect.mayoclinic.org/comment/958681/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2023

@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe...

https://connect.mayoclinic.org/comment/937831/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2023

I have some small nodules in my lungs but my NET doctor said everyone has them...

https://connect.mayoclinic.org/comment/912003/

Discussion: FDG PET scan vs. 68Ga DOTATATE PET scan for neuroendocrine cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2023

Hello Diet information can be found at https://netrf.org/. I have stage 3 lung NETs and have...

https://connect.mayoclinic.org/comment/899083/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Thanks…. My diagnosis was Large Cell lung NETs, I was told it was more aggressive than...

https://connect.mayoclinic.org/comment/897051/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Hi @ce1b I take Octreotide (similar to lanreotide) injections every 4 weeks for my lung NETs....

https://connect.mayoclinic.org/comment/896824/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

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