← Return to Pancreastatin level at 1500

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Phxsuns (@cfuller84)

Pancreastatin level at 1500

Neuroendocrine Tumors (NETs) | Last Active: 4 days ago | Replies (27)

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@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.

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Replies to "Hi Colleen, I appreciate you thinking of me. Yes I did speak to a social worker..."

@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?

@cfuller84, I'm hopeful that further investigations will reveal answers. Many NETs patients share the experience of a long road to diagnosis. When will you have the neck biopsy?