Connect
← Return to Welcome to the NETs Group! Come say hi.
Discussion
Welcome to the NETs Group! Come say hi.
Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)Comment receiving replies
Hello @kate12345 and welcome to Mayo Clinic Connect. While I'm sorry to hear of your diagnosis of a Pancreatic NET, I'm glad that you found a place to get support. I related to your words, "I found this forum while obsessively Googling..." I found Connect the same way. In 2016, I was facing my third surgery for carcinoid cancer in the duodenal bulb and was beside myself. I was looking for support groups by googling NETs and Carcinoid and came upon Mayo Connect. Here is a link to my first post, https://connect.mayoclinic.org/discussion/i-have-recently-been-diagnosed-with-my-third-neuroendocrine-tumor-has-anyone/.
It was great to meet others who had this rare disorder and who had lived through it and shared with me about their journey.
You sound like you are approaching this diagnosis with a great attitude in that you want to connect with others and hear their stories. Since you do not mention symptoms of Insulinoma, I'm assuming that the NET to the pancreas has not affected your blood sugar levels. That is always a good thing.
Here are some other links to Pancreatic NETs that you might find helpful, https://connect.mayoclinic.org/discussion/pancreastatin-level-at-1500/. I would like to invite @elm60 to this discussion as she discusses her Pancreastatin level (I don't think you mentioned that level). She also talks of some of her symptoms.
Are you currently seeing a NET specialist? This is very important. General oncologists are not always the best to treat more rare forms of cancer. Here is a listing of NET specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
If you don't mind sharing more, what symptoms were you having that led to this diagnosis?
Replies to "Hello @kate12345 and welcome to Mayo Clinic Connect. While I'm sorry to hear of your diagnosis..."
Hi Teresa,
The day after Thanksgiving, I had really bad epigastric pain with nausea and vomiting. I went to the ER and they did a gallbladder ultrasound, which showed something in the pancreas. They then did a CT and saw the tumor. I haven’t had any pain or further symptoms since that day. The tumor presses against my stomach and the duodenum, so maybe the big Thanksgiving meal contributed to the symptoms, or maybe the drinks I had (I don’t usually drink) induced a mild pancreatitis. Regardless, I have fortunate been fine since and have never had any symptoms to indicate that this is a functioning NET.
I definitely agree with you that I need to see a NET specialist because when I saw the GI oncologist, he told me he doesn’t even like to call NET’s “cancer” and at the end of the appointment he said, “You’re not going to die from this.” Meanwhile, we haven’t even staged it yet and don’t know if it’s metastasized beyond the lymph nodes, and the tumor is only borderline resectable, so I thought that was an awfully cavalier statement to make. I have an appointment with a NET specialist on 1/12, the week after my scan. I just want to get some treatment started! The waiting is hard.
Thank you for welcoming me to the group. I’ll keep you posted!
Kate
Connect
Hi Kate12345
I am also a PNET patient diagnosed in 2017. I had a partial pancreactomy and then a second surgery in 2019 at Mayo Jacksonville. I had two primary tumors in the head and tail. My KI67 in both were <3% Grade 1 well differentiate, 0/35 lymph nodes. My Pancreastatin is well above the range at 637 but my NET Specialist said that this is just one of the tools they use in connection with scans to monitor post surgery ( or if they cannot locate the primary tumor)
I just had my 30 month MRI and labs and all is stable. I would like to invite you to our Facebook group Neuroendocrine Cancer Zebras. We have a monthly zoom meetings every 1 st Thursday. We have our a topic every month, speakers and Net Specialist that also may join in to answer questions. It’s a great group and I have really learned a lot about NETs from this group!
Please keep us posted on your 1/7 Gallium scan. Are you currently experiencing any flushing or diarrhea?
I will be keeping you in my thoughts and prayers and see what the experts are planning to do going forward. You are not alone and I am glad you found us. ! 💜