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?

@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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@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?

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@hopeful33250

@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?

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Yes absolutely i will let you know how the biopsy goes.

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@colleenyoung

@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?

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They are having me do a new Mri of my neck and then referring me to the ent so i dont have a date for the biopsy as of yet but should be soon.

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@cfuller84

They are having me do a new Mri of my neck and then referring me to the ent so i dont have a date for the biopsy as of yet but should be soon.

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Hello @phxsums, I was wondering if you have had the biopsy yet. If not, do you have any appointment schedule for it?

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@hopeful33250

Hello @phxsums, I was wondering if you have had the biopsy yet. If not, do you have any appointment schedule for it?

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Hi . I just saw your reply. The ENT was really busy and booked way out but I will be meeting with him on sept 16th. I also had my pancreastatin repeated again and was told if it still high then they want to do a 3rd pet scan and refer me back to oncology. So im waiting the results of this pancreastatin test hoping its much lower.

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@cfuller84

Hi . I just saw your reply. The ENT was really busy and booked way out but I will be meeting with him on sept 16th. I also had my pancreastatin repeated again and was told if it still high then they want to do a 3rd pet scan and refer me back to oncology. So im waiting the results of this pancreastatin test hoping its much lower.

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It is so good to hear from you, @cfuller84, and to get an update. It does take a while to get into seeing a new specialist, but September 16 is coming up soon. I'm sure you would like to have some resolution and answers.

I look forward to hearing from you again. Will you post an update when you have more information?

How are you feeling now? Any changes?

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Yes it's good to hear from you too. I plan on posting again and will keep you updated 🙂 I have been taking several vitamins and also doing accupuncture and my abdominal pain has improved though not gone away. I still feel very fatigued all the time, and I also get the heart racing episodes where it feels like my heart is pounding very hard and fast and I feel dizzy. I was diagnosed with POTS at mayo and they think that is the cause. I wonder if other nets patients get similar symptoms. I also saw on another post someone recommended a new copper pet scan I think I will definitely look into that if they are wanting me to get another pet scan. Hope you have a wonderful weekend.

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@cfuller84

Yes it's good to hear from you too. I plan on posting again and will keep you updated 🙂 I have been taking several vitamins and also doing accupuncture and my abdominal pain has improved though not gone away. I still feel very fatigued all the time, and I also get the heart racing episodes where it feels like my heart is pounding very hard and fast and I feel dizzy. I was diagnosed with POTS at mayo and they think that is the cause. I wonder if other nets patients get similar symptoms. I also saw on another post someone recommended a new copper pet scan I think I will definitely look into that if they are wanting me to get another pet scan. Hope you have a wonderful weekend.

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I am glad to hear that your abdominal pain is somewhat better.

Wishing you well, @cfuller84. When you get the results of your newest group of tests, will you post again?

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@cfuller84

Yes it's good to hear from you too. I plan on posting again and will keep you updated 🙂 I have been taking several vitamins and also doing accupuncture and my abdominal pain has improved though not gone away. I still feel very fatigued all the time, and I also get the heart racing episodes where it feels like my heart is pounding very hard and fast and I feel dizzy. I was diagnosed with POTS at mayo and they think that is the cause. I wonder if other nets patients get similar symptoms. I also saw on another post someone recommended a new copper pet scan I think I will definitely look into that if they are wanting me to get another pet scan. Hope you have a wonderful weekend.

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What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had three scans, all negative, and don’t want anymore because my hair is exiting my scalp. Occasionally my heart races and I feel dizzy and I have weird hot flashes.
Is pancreastatin a blood test I should ask for? None of my doctors has requested anything but four (so far) Chromogranin A tests and two HIAA tests. The latter were negative. I’m so weary of all this and wish someone would find a solution.

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@dbmenger

What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had three scans, all negative, and don’t want anymore because my hair is exiting my scalp. Occasionally my heart races and I feel dizzy and I have weird hot flashes.
Is pancreastatin a blood test I should ask for? None of my doctors has requested anything but four (so far) Chromogranin A tests and two HIAA tests. The latter were negative. I’m so weary of all this and wish someone would find a solution.

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POTS stands for postural orthostatic tachycardia syndrome. It is a disorder of the autonomic nervous system that causes issues with heart rate and blood pressure. I was diagnosed after a tilt table test done at Mayo. That's interesting. I had normal chromogranin A but high pancreastatin and slightly elevated HIAA levels. It would not hurt to ask your Dr about it to get their opinion. Every doctor that I have spoken to in regards to pancreastatin has given me a different opinion. Some of the doctors believe a higher than normal pancreastatin is indicative of having a NET. I completely understand where you are coming from. The last provider I saw " said it seems like you have been on a very long road trying to get a diagnosis ". I had to hold back my emotions and just say yes yes I have been. I hope you find the answers and your able to get a diagnosis.

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@cfuller84

Hi . I just saw your reply. The ENT was really busy and booked way out but I will be meeting with him on sept 16th. I also had my pancreastatin repeated again and was told if it still high then they want to do a 3rd pet scan and refer me back to oncology. So im waiting the results of this pancreastatin test hoping its much lower.

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Hi @cfuller84

I recall that you had an appointment with an ENT specialist scheduled for yesterday. I hope that appointment was helpful to you.

Would you be able to provide an update?

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Hi Teresa,
Yes I was able to see the ENT. Well he wants me to get another CT scan done with contrast because he said the tumor was not visualized well on the MRI i had just done LOL.. These imaging tests can get frustrating as it seems they need so many of them. I think I have 3 or 4 already showing the tumors and now i need another. He said after the ct scan then he will probably want to do whats called a fine needle biopsy. I am happy with that as it seems not be very invasive. The great news is my pancreastatin test has come down from 1500 to 50 !! Whatever I have been doing is working and I need to keep it up !!! I have been taking several supplements and also doing periodic fasts and I believe it is working and my body is healing. I am feeling very grateful. I will still continue on with the biopsy plan.

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