Pancreastatin level at 1500

Posted by Phxsuns @cfuller84, May 1 5:40am

Hi,
I have had 2 pancreastatin test 1st at 1,000 2nd at 1500 . My gallidium pet showed diffuse uptake in the pancreas but thought it probably not cancer otherwise normal. I am having chronic severe abdominal pain and fatigue. I feel like my scan missed the tumor due to my symptoms and the high pancreastatin. The GI said they cant do anything other than pain meds because nothing showed up on the scan. Has anyone else had this happen? Any suggestions?

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!

REPLY

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?

REPLY
@hopeful33250

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?

Jump to this post

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

REPLY

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

REPLY
@cfuller84

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

Jump to this post

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.

REPLY

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

REPLY
@cfuller84

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

Jump to this post

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

REPLY

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!

REPLY
@cfuller84

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

Jump to this post

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

REPLY

@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?

REPLY
@colleenyoung

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

Jump to this post

Hi Colleen,

I appreciate you thinking of me. Yes I did speak to a social worker at Mayo clinic. I had another ct enterography scan done which was negative and they had a net specialist review my records and case. I did not get to meet with him but he said because of the negative ct enterography my chance of having a NET is very low.
Im still having severe abdominal pain and the only answer GI can give me is we didnt find anything except your very high pancreastatin test so they diagnosed me with IBS. I have been trying different diets , probitoics and supplements to help my abdominal pain with little success.
The social worker recommended I send the NET specialist a message with my concerns and make an appointment with a counselor. Unfortunately because I did not meet with the Dr I dont think I am able to send him a message. I will think about the counseling but my main priority right now is my physical health and that is where I want to focus my energy.
My health picture is very complex. I was also diagnosed at mayo with tumors in my spine called neurofibromas which are genetic. However all the genetic testing they have done to diagnose me with that disease was negative. I finally saw a new DR. outside mayo who wants to have an ent biopsy the tumors in my neck to rule out that they could be a NET or cancerous type due to my labs and clinical picture. Im hoping for the best whatever outcome that is : )
Im planning on taking a vacation in july with my family so I tell myself ill be feeling well by then. Thanks and be well.

REPLY
@cfuller84

Hi Colleen,

I appreciate you thinking of me. Yes I did speak to a social worker at Mayo clinic. I had another ct enterography scan done which was negative and they had a net specialist review my records and case. I did not get to meet with him but he said because of the negative ct enterography my chance of having a NET is very low.
Im still having severe abdominal pain and the only answer GI can give me is we didnt find anything except your very high pancreastatin test so they diagnosed me with IBS. I have been trying different diets , probitoics and supplements to help my abdominal pain with little success.
The social worker recommended I send the NET specialist a message with my concerns and make an appointment with a counselor. Unfortunately because I did not meet with the Dr I dont think I am able to send him a message. I will think about the counseling but my main priority right now is my physical health and that is where I want to focus my energy.
My health picture is very complex. I was also diagnosed at mayo with tumors in my spine called neurofibromas which are genetic. However all the genetic testing they have done to diagnose me with that disease was negative. I finally saw a new DR. outside mayo who wants to have an ent biopsy the tumors in my neck to rule out that they could be a NET or cancerous type due to my labs and clinical picture. Im hoping for the best whatever outcome that is : )
Im planning on taking a vacation in july with my family so I tell myself ill be feeling well by then. Thanks and be well.

Jump to this post

@cfuller84

Hello, while I realize that you responded to Colleen's post (@colleenyoung) I wanted to step in and thank you for the update.

I'm sure you must feel frustrated as you don't seem to be getting any answers. However, it does sound like you are dealing with a rather complicated set of health problems.

The ENT biopsy certainly might be a good idea.

I hope that get some results that help you to understand what is happening. Will you post again?

REPLY
Please sign in or register to post a reply.