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Neuroendocrine tumor and carcinoid tumor
Neuroendocrine Tumors (NETs) | Last Active: Jun 14, 2023 | Replies (26)Comment receiving replies
Hello @makebadaniels73 and welcome to the NET Support Group on Mayo Connect. I see that you have already connected with @vinnie694 who has shared with you based on his experience. I can understand your wanting to learn more about this rather rare type of cancer. As it is rare, it is not something that is easily understood. The Carcinoid Cancer Foundation (CCF) is a good place to learn more. Here is their website,
https://www.carcinoid.org/for-patients/
Here are some Youtube videos which are helpful in understanding NETs/carcinoids,
https://www.bing.com/videos/search?q=carcinoid+cancer+foundation&qpvt=carcinoid+cancer+foundation&FORM=VDRE. These videos are taught by experts in the field of NETs/carcinoids.
I have had three surgeries for carcinoids in the duodenal bulb. They were several years apart (2003, 2005 and then again in 2016). At this point, there does not seem to be metastasis.
Have you had a 68 Gallium PET scan? This is the latest and most effective tool in detecting NETs (which often do not show up in traditional scans and/or MRIs). Here is some information about this scan, which is generally found in major health care centers, like Mayo Clinic or perhaps a university medical school.
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
If you care to share more, I'm wondering what symptoms led to the diagnosis of NETs/carcinoid.
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Thank u so muchhh!! I'm currently waiting for a PET Scan and wat lead me to where I am today started year b4 last with an autoimmune..chronic atrophic autoimmune gastritis. Nothing over the counter was helping my bloating, full, gassy feeling I had for over 10 yrs. Now I'm here. I was having difficulty with breathing at times and pain in my abdomen area, not able to use the restroom for days at a time. I've had 2 polyps in the past and my latest biopsy which I had March 3, 2023, caught these 2 tumors. I also have thyroid issues, Hyperthyroidism. I'm so new to this yet have been searching for answers for so long. I thank God for My Gastroenterologist for diagnosing me and finding these rare, cancerous tumors. I'm also due to get my pancreas looked at for she is concerned on where it is all triggered frm. So I came here to further educate myself while I fight thru and support others while looking for the same in return. I appreciate any and all info, thank u so much again.