Pancreastatin level at 1500

Posted by Phxsuns @cfuller84, May 1, 2021

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?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Phxsuns | @cfuller84 | Jun 8, 2021

In reply to @colleenyoung "Hi Phxsuns, I've been thinking about you. Did you get in touch with a Mayo Clinic..." + (show)

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 8, 2021

In reply to @cfuller84 "Hi Colleen, I appreciate you thinking of me. Yes I did speak to a social worker..." + (show)

@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?

Colleen Young, Connect Director | @colleenyoung | Jun 9, 2021

In reply to @cfuller84 "Hi Colleen, I appreciate you thinking of me. Yes I did speak to a social worker..." + (show)

@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?

Phxsuns | @cfuller84 | Jun 9, 2021

In reply to @hopeful33250 "@cfuller84 Hello, while I realize that you responded to Colleen's post (@colleenyoung) I wanted to step..." + (show)

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

Phxsuns | @cfuller84 | Jun 9, 2021

In reply to @colleenyoung "@cfuller84, I'm hopeful that further investigations will reveal answers. Many NETs patients share the experience of..." + (show)

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 16, 2021

In reply to @cfuller84 "They are having me do a new Mri of my neck and then referring me to..." + (show)

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

Phxsuns | @cfuller84 | Sep 9, 2021

In reply to @hopeful33250 "Hello @phxsums, I was wondering if you have had the biopsy yet. If not, do you..." + (show)

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.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 9, 2021

In reply to @cfuller84 "Hi . I just saw your reply. The ENT was really busy and booked way out..." + (show)

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?

Phxsuns | @cfuller84 | Sep 9, 2021

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.