PanNET and CgA results

Posted by petie1 @petie1, Apr 2 2:24pm

Good Day,
It's been recently discovered that I have a tumor or lesion on my pancreas. I'm 20 years post whipple, and about 6 months ago, I went from 2 x 40 creon pills to 3 x 60 creon. Of course I ran out of pills. I did not have any debilitating issues from the whipple, over the years. This was a sign of a change or issue. Then the pains - back, spine, abdomen. So another trip to the Dr. and a scope was done with biopsy. The find a < 1cm NF PanNET on the tail of what is left of my pancreas. Its well differentiated and grade 1 with low proliferation.
My doctor, oncology gastro, believes we wait a year. My usual gastro, or local guy does some blood work and is a bit alarmed which makes me now alarmed. On 2/14/25 my CgA was 102.5 and on 3/26/25 its 291 and the normal test range is 0.0 - 101.8 - both done by LabCorp.
I'm not trending in the right direction. What am I missing? Why am I waiting?
I have a maintenance scan, done 7 months ago, and there's no lesion.

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

fraaseo | @fraaseo | Apr 26 10:28am

In reply to @vickihorseman "Does everyone get the CgA test when doing bloodwork? My Oncologist does not order it." + (show)

I used to get the CgA bloodwork every 3-6 months. Since my cytoreductive surgery they started ordering it monthly. Out of all the tests they run, the CgA has been the most consistent for me monitoring tumor growth. Prior to 2nd surgery the highest level was 88 & NETS had metastasized everywhere; after surgery its been in low 20’s consistently.

eei | @eei | Apr 27 10:40am

In reply to @vickihorseman "Does everyone get the CgA test when doing bloodwork? My Oncologist does not order it." + (show)

my oncologist always requires a CgA test be done before I see him

Teresa, Volunteer Mentor | @hopeful33250 | Apr 27 4:43pm

In reply to @eei "my oncologist always requires a CgA test be done before I see him" + (show)

Hello @eei and welcome to the NETs support group on Mayo Connect. I see that your oncologist is requiring you to have a CgA test prior to your appointment with him. The CgA test is just one of many that are often requested when we are diagnosed with a neuroendocrine tumor. Here is some information about the CgA blood test as well as other labs that are often done when this type of diagnosis is made, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/.

As this is your first post, please share as you are comfortable doing so, a little about your history with neuroendocrine cancer? For example, how long ago were you diagnosed? How are you feeling?

pavlina60 | @pavlina60 | Apr 27 4:54pm

In reply to @vickihorseman "Does everyone get the CgA test when doing bloodwork? My Oncologist does not order it." + (show)

I used to have CgA test done every 3 months (before my CT scans). Now I have it every 6 mo when I see my oncologist and have a CT

petie1 | @petie1 | Apr 28 6:36am

In reply to @vickihorseman "Does everyone get the CgA test when doing bloodwork? My Oncologist does not order it." + (show)

My MD ordered CgA tests only after the fine needle biopsy results show the PAN NeT.
Best to you

vickihorseman | @vickihorseman | Apr 29 4:18am

In reply to @hopeful33250 "Hello @eei and welcome to the NETs support group on Mayo Connect. I see that your..." + (show)

Absolutely open to sharing. I was diagnosed originally in 2020 after a 30 day bout with constant vomiting and about 30 pound weight loss. My gall bladder was removed first and did nothing to get rid of the symptoms. After 5 ER visits and Gall bladder removal I had an emergency exploratory and a surgeon found the tumor. Stage 4 and just about ate through my small intestine, I had a wonderful surgeon who did her best to get it all but it was already in my lymph nodes. In 2024 had a scan and tumors showed up in my ovaries. Scheduled a Hysterectomy and had tumors in both ovaries. Did another scan and found them just hanging out in my liver as if they were supposed to be here.
Currently on Lanreotide every three weeks and Xermelo for the diarrhea. Been on this schedule since the end of last year. Still struggle with fatigue ( baddddddddddd) and a little diarrhea but the Xermelo helps.
I liked having the CgA test. My doc said too many other things influence the levels in my system and that its just an indicator. I felt like I knew when tumors were acting up by that test Is it an expensive test to run

Teresa, Volunteer Mentor | @hopeful33250 | Apr 29 3:27pm

In reply to @vickihorseman "Absolutely open to sharing. I was diagnosed originally in 2020 after a 30 day bout with..." + (show)

Yes, my doctor has said the same thing about the CgA test, @vickihorseman, that it is just one indicator and can be influenced by other health conditions as well as medications. It sounds as if you have had quite a struggle getting the correct diagnosis and treatment.

Have you been able to gain back any of the weight you lost?

vickihorseman | @vickihorseman | Apr 30 4:06am

Haven't been able to keep weight on just yet but I had some I could lose. I don't miss the weight but I have no muscle tone anymore. Is that common? I wondered if it was the meds or the cancer.