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Pancreatic NETs: Looking to connect with anyone with insulinoma
Neuroendocrine Tumors (NETs) | Last Active: Mar 21 4:18pm | Replies (86)Comment receiving replies
Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a benign insulinoma on pancreas head. All other organs appear normal. Surgeon suggested Whipple procedure. Terrifird! Mri and pet scan scheduled. How do I get second options from a high volume hospitals? Hoping for enucleation or ablasion. Thanks for any info.
Replies to "Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a..."
Hello @sunflower1398, and welcome to the NETs support group on Mayo Clinic Connect. You are wise to be seeking a second opinion. I highly recommend obtaining a second opinion from a NET specialist. 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 NET specialists in the U.S.; https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/
General oncologists aren't as well-versed in the latest treatments for rare cancers such as this one. I would also like to invite @ahtaylor to post with you. She has experience with insulinoma and has been actively involved in her treatment.
How do you feel when you exercise and have hypoglycemic episodes?
@sunflower1398 My first diagnosis was handled in NC - they were great! However, not al tumors were removed and shortly after my whipple I had recurrence of hypoglycemia. Around a year later my hypoglycemia persisted and with no identification of tumors with EUS and MRI I was referred to Mayo. Mayo identified 9 more tumors and I had a distal pancreatectomy and splectomy. Again, within months I had recurrence of hypoglycemia. Insulinomas are good at hiding from imaging and are tricky to manage at times. My primary endocrinologist referred me to Mayo and that was how I was able to secure advanced care for insulinomas. My recommendation would be a second opinion if you are not comfortable with the initial opinion. Whipple is generally curative if insulinomas are not metastatic. Whipple is a very difficult procedure. For me, mine were metastatic, so it complicated my case. Please let me know how I can assist. I am more than happy to connect further to share my experiences.
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@sunflower1398
I would recommend getting multiple opinions. Most places won’t hesitate to see you especially after you tell them you already have a diagnosed insulinoma. You could also ask your current doctor/surgeon if they would suggest someone if you want a second opinion. I live near NYC and traveled halfway across the country to Mayo Clinic in Rochester. I highly recommend Dr Michael Kendrick. He performs the whipped laparoscopically and robotically. My insulinoma was also on the head of the pancreas. Best of luck to you, if you have any questions feel free to reach out.