Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
@lucci50 I see Dr. John Del Valle at University of Michigan. Dr. Del Valle does not do surgery, however, he is considered quite knowledgeable in the area of NETs. Here is the U of M website that introduces you to Dr. Del Valle http://www.uofmhealth.org/profile/137/john-del-valle-md. Best wishes! Teresa
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If Dr. John Del Valle does not treat surgically, what about if NET was metastatic to other regions of the body. E.g bone Mets
@gaylejean That is a good question. I have always thought that the Octreoscan was the best way to track NETs, but I know that other scans have been used as well. Let’s see what the other members of our community have to say about that.
@amyh2439 @tresjur @joannem @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 Please share with us, what types of scans have been used in your situation to track tumors. Teresa
Hello @netpatient and welcome to Mayo Clinic Connect. I am happy to have you posting in our NET discussion. Have you personally been diagnosed with NETs or perhaps a family member?
At the University of Michigan, there are doctors who perform surgery, I'm sure if you called them you could find a surgeon or an oncologist for treatment of metastasis.
As you just started posting, please feel free to share more information, as you feel comfortable doing so. Would you share about your history with NETs and how you are feeling?
Hello at hopeful33250, I am the patient. I was diagnosed in 2018/19 though I had known about this tumor for about 2 decades. Possibly existed longer than that. After metastasis, NET damaged my bones.. Though I have shrinked my tumor by about 50% now. My damaged bones is my greatest priority but the existence of the tumor is still a threat. Can you help me with Michigan hospital contact. I need medical help/care.
Thanks again. Can you help with University of Michigan hospital link or email or phone or contact.
Here is a link to the University of Michigan appointment line, https://www.uofmhealth.org/patient-visitor-guide/appointment-information. If you contact them and explain your condition, they will find the best doctor for you. It will probably be someone in oncology.
I hope you are able to get some help,@netpatient
Will you keep in touch and let me know how you are doing?
Hi everyone, I am newly diagnosed with a pancreatic NET, 11 cm in the body & tail, Grade 1, mets to gastrohepatic lymph node per CT scan (plus 2 more nodes that look suspicious), and I’m awaiting my dotatate scan on 1/7. I’m 49 years old and the single mom of a 9-year-old daughter. I don’t have any specific questions right now, but I’m looking forward to learning from others who have been on this journey. I’m glad I found this forum while obsessively Googling what a Chromogranin A level above 400 might indicate prognostically!
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?
Were you able to get an appointment at the University of Michigan?
Hello hopeful, I just received the link recently. So, I will apply and feedback. You're kind
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