Connect
← Return to Neuroendocrine Tumor - no treatment plan method
Discussion
Neuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: Apr 7 1:09pm | Replies (129)Comment receiving replies
Results from my Dotatate Scan are back. It doesn't seem so good but it probably could be worse.
1. Mid/distal ileal loop with focal high-grade DOTATATE uptake best seen axial fused image slice 232 (SUV 28) just right of midline very likely primary small bowel neuroendocrine tumor. Nearby nodal lesion with focal intense DOTATATE signal, 1.4 cm, adjacent to loop of nearby small bowel indicating metastatic mesenteric node best seen slice 236 axial fused images. RLQ mesenteric large 4.1 cm node which shows intense uptake (51.3 SUV). Findings indicate primary ileal neuroendocrine tumor with locoregional mesenteric metastasis.
There were some other things listed about my small intestine but otherwise there is normal physiologic uptake in the liver, spleen, pancreas, urinary structures and large intestine and everything above these organs.
-------------------------
I'm getting calls to make an appointment in Endocrinology and the GI clinic with more labs to be done prior to those appointments. There isn't any treatment plan yet so I'm hoping someone here could cut to the chase and tell me what should happen next. I doubt I will do any type of surgery so I'm more interested in my medical options.
Replies to "@hopeful33250 Results from my Dotatate Scan are back. It doesn't seem so good but it probably..."
@dadcue
Hello Mike,
Your imaging sounds a lot like mine from several months ago. If you scan through this forum, you'll find that most of these cases are different, but it may sound a lot worse than it is. I have a couple of tumors in my abdomen with lesions on my pancreas and liver. I started monthly Octreotide injections last November, and my Serotonin and Chromogranin levels have gone from about eight times normal to near normal in that time. I've never had symptoms and still don't - my NET's were found accidentally in a cat scan looking for a hernia. Hopefully, you're in the same boat.
Connect
@dadcue
Hello Mike,
I appreciate your post with updates based on your Dotatate Scan. I'm sure you are relieved to have some answers. Most of us have found that a consultation with a NET specialist is the best move after your initial diagnosis. NETs are a rare form of cancer, and NET specialists have the experience and knowledge base that will be most helpful to you right now. Once you have an initial consultation, they may be able to work with your local oncologists to achieve the best results for you.
There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with a listing of NET specialists: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/
It is also important to educate yourself about NETs. By learning as much as you can, you will be able to advocate for the best care. Here is some information from the Neuroendocrine Tumor Research Foundation website,
https://netrf.org/for-patients/
Here is more information from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132
I look forward to hearing from you again as you work through this process. Will you post any questions or concerns?