Anyone else have Gastric NET? Going to Mayo

Posted by jessicagirl06 @jessicagirl06, Apr 17 1:30pm

Hello,

I am 37 and in January I was diagnosed with Gastric NET and also an autoimmune disease (autoimmune gastritis) I have had 3 NET polyps removed. 3 are grade 2 and 1 was a grade 1. I started my care at the U of I but will be seeing Mayo coming up for a 2nd opinion. Looking to see if anyone else on here has Gastric NET and has seen one or both places

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

lindabees | @lindabees | Apr 18 11:53am

I'm sorry you have to ho through this. My husband was diagnosed with stage 4 pancreatic net 17 years ago. He sees a net specialist at Mayo Phoenix. The Mayo system is amazing!! They have net specialists at all 3 locations. Which campus will you be going to?

Teresa, Volunteer Mentor | @hopeful33250 | Apr 19 9:41am

Hello @jessicagirl06 and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. When you have any rare cancer disorder, like NETs, it is good to meet with others who are on the same journey. I have had three surgeries for NETs in the upper digestive tract. My first surgery was over 22 years ago.

You are wise to seek a second opinion and Mayo Clinic is a great place for a consultation. At Mayo Clinic there are NET specialists at all of their locations (Minnesota, Florida and Arizona).

What types of treatments have you had so far?

Colleen Young, Connect Director | @colleenyoung | Apr 27 9:54am

@jessicagirl06, I'm tagging a few members like @lniemczura @terryabk @pamela1685 @jessie59 and @lupitaromero who have experience with gastric (stomach) NETs. Also see this related discussions:

- Anyone have a stomach NET? https://connect.mayoclinic.org/discussion/anyone-have-a-stomach-net/

How are you doing? What are next steps for you?

pamela | @pamela1685 | Apr 27 10:45am

In reply to @colleenyoung "@jessicagirl06, I'm tagging a few members like @lniemczura @terryabk @pamela1685 @jessie59 and @lupitaromero who have experience..." + (show)

Thank you, Colleen! I will check out the link. I so appreciate you!

lupitaromero | @lupitaromero | Apr 28 7:25pm

In adittion......
Could be usefull to know the complete biopsy description:
Ki, Grade, Functional or not, Primary "site", etcetera

I was diagnosticated on 2019, my first treatment was 18 Sandostatine vaccines, the second treatment was resection, the third treatment was radiotherapy with TrueBeam... and a "some" adittional resections, I forgot the number of all of them.

In this journey, I had 11 PET CT with octreotide
I'm from Mexico City and my Oncologist Center is Medica Sur, Diana Laura Riojas's Oncologist Center

Welcome to this group, you're in the right place
I'm sending you blessings my dear =)

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