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← Return to Pancreastatin level at 1500
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Neuroendocrine Tumors (NETs) | Last Active: Aug 11 8:20pm | Replies (31)
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Mayo GI has not referred me to a net specialist so its been very frustrating because i am not able to see a NET specialist at mayo. I saw a net specialist outside of mayo but he had a really negative opinion on the pancreastatin test saying it was not important and mayo is the only group that uses it. Yes my range of pancreastatin is the 100 to 288 so my test seems very high to me at over 1500. My 5HIAA 24 hour urine was elevated at 13.3
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Phxsuns, it sounds like your GI has not given you a clearly understandable explanation as to why no referral to a NETs specialists was made or deemed necessary. You are concerned that something may have been overlooked as can often happen with neuroendocrine tumors. Luckily, you have a few options to help you get answers and to bridge the gap in understanding.
You can:
1. Ask for a referral to an oncology social worker at Mayo Clinic. Read more about oncology social work here:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
2. Contact the Office of Patient Experience. A Patient Experience staff person will help address concerns about your care experience at Mayo Clinic. If you would like to share a concern, please complete the online feedback form (https://mccoreprodcrmextncast.blob.core.windows.net/$web/ShareAConcern.html) and someone will contact you within three business days. Or you can call or email them.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
Would either of those choices be options for you to pursue? I want you to have confidence in your care.