Pancreastatin level at 1500

Hi Phxsuns
Welcome to our discussion group. I am so sorry to hear that your are having pain and fatigue. Since you have had two Pancreastatin test and Gallium 68 scan, are you currently under the care of a NET Specialist? I have had two primary tumors removed from my pancreas in 2019. My Pancreastatin test are also still elevated. The range is 100 to 288 and mine are at 646. I am just assuming your test range is near mine as well, but please let us know. My Oncologist said that these tests are good tools but they really rely in the results of the scans to confirm the presence of disease. However, with your symptoms I hope that they have some next steps for your treatment of these symptoms? Have you had a 5HIAA urine or blood test? This is another tool they use regularly for surveillance. Please let us know!

Hello @cfuller84

I read your post about the pain and the results of your blood test. Since you are experiencing so much pain, please know that it is your right to get a second opinion.

I would agree with @elm60 that you need a consult with NETs specialist. Do you know how to find one in your area? Here is a list from the Carcinoid Cancer website. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

If you can get to a Mayo Clinic facility (they are in Minnesota, Florida, and Arizona) that would be a great place for a second opinion. Here is information about obtaining an appointment at Mayo Clinic https://www.mayoclinic.org/appointments?

I hope to hear from you again to see what progress you have made in finding some help. Will you post again?

Hi,
So i have been going to the mayo GI department in PHX Arizona. Unfortunately they do not want to refer

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

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.

I would be willing to try option 1. When i read your link it says it is available for those diagnosed with cancer so i am not sure i would quality. At this point im willing to do whatever it takes to get answers.
Thanks

I encourage you to inquire about social work at Mayo Clinic.

Hello @cfuller84

I agree with Colleen, @colleenyoung, about seeking the help of a social worker. If you aren't comfortable with an oncology social worker just request a conversation with a general social worker.

I hope you find some answers and help!

Hi Phxsuns, I've been thinking about you. Did you get in touch with a Mayo Clinic social worker?

@cfuller84

As it has been several weeks since you last posted I was wondering how you are doing. Will you post when you have an opportunity?