Pancreatic Cancer Concerns: What tests are done for diagnosis?

Posted by sas2023 @sas2023, May 25, 2023

Hi everyone, looking for some additional thoughts on guidance on my situation. Here is some history on what I have been experiencing the last 8 months.

45 y/o male and have had pancreatic concerns/symptoms over the last 8 months. I’m 5’8 and 200lbs. Just wanted to get some advice if any more tests should be done or be confident of what has been done so far.

Symptoms include:

-left side mid-back pain (worse when sitting or lying down
-left side pain in upper quadrant. Dull pain most of the time, but has gotten severe enough for multiple ER visits
-minimal weight loss, but fell like I have lost muscle mass and experienced weakness. Especially on the forearms, biceps, and legs. --While only a 2 lb weight loss during this time, have also gone down 3 belt loops
-Excessive burping and not just after meals
-Extreme fatigue

What’s been done so far:

-3 Abdominal and Pelvic CT Scans with contrast (no pancreatic protocol). All have resulted in a normal pancreas. 2 showed moderate stool and most recently a mild fatty liver. Everything else normal
-Multiple blood tests mostly clear, except for most recently showing a blood glucose of 103 (fasting). Typically less than 90
-Lipase normal
-C-Reactive Protein normal
-Liver blood tests normal
-Met with primary doctor and 4 GI doctors
-3 ER visits, including hospital stay
-Clear colonoscopy
-Upper endoscopy found mild gastrititis
-Clear urine test
-Clear chest x-ray

Doctors feel confident it is not cancer. The belief it is a mix of GERD and functional abdominal pain.

I understand pancreatic cancer can be missed on a CT scan, but can it be missed on 3? My concern is it could be in the body or tail and hard to see via imaging.

Should I request an MRI, MRCP, or CT with pancreatic protocol? Any other tests or exams to consider? Or should I trust the doctors and tests and work up that has been done so far. No history of pancreatic cancer in my family and understand I am most likely dealing with some level of health anxiety as well.

Thanks so much for any thoughts and feedback you can provide.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

wellandwhole | @wellandwhole | Sep 2, 2023

In reply to @markymarkfl "I hope they don't mind having you give some blood; a few other tests might be..." + (show)

@markymarkfl

I hope they don't mind having you give some blood; a few other tests might be helpful.

CA19-9 and CEA are the two primary blood markers related to pancreatic cancer, and they're pretty cheap. Neither one is a conclusive diagnostic for PC, but elevation on either one, especially in conjunction with anything else, should be cause for more investigation.

Several DNA-based blood tests can also be informative. The test from Invitae can detect "germline"
gene mutations you inherited from your parents that indicate you might be more susceptible than average to certain types of cancer. https://www.invitae.com/en/cancer Family history of pancreatic cancer is not the only red flag; breast and other digestive cancers often spring from the same mutations as PC. (My ancestors had both -- the mutations and the other cancers -- that predisposed me to PC.)

Various tests from Guardant (e.g., https://guardanthealth.com/products/tests-for-patients-with-advanced-cancer/ ) can identify DNA shed by tumors, and also identify "somatic" mutations they possess (which can help fine-tune your treatment).

There's a test called Galleri from Grail ( https://www.galleri.com/ ) that claims to be able to detect 50 different types of cancer early from a simple blood draw. It would most likely be a self-pay of about $1000, and no guarantee it works. If it gives you a false positive, at least you have something to investigate. If it gives you a false negative (like it did me), it's a false sense of confidence that might delay treatment.

Consider all the above as worthy of exploration (but none in isolation), and any positives as a reason to dig deeper. Those are the non-invasive options. They're reasonably east and affordable, and if you push for them, you might get them sooner rather than later.

Invasive surgical options like endoscopic ultrasound + ERCP + biopsy might not be advisable unless the non-invasive tests suggest they are warranted.

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Did you get the Galleri test and have it come back as a false negative? I just recently got it.

markymarkfl | @markymarkfl | Sep 3, 2023

@wellandwhole , Yes, I got a false negative from Galleri. My PC in particular seemed to play hide and seek.

Summary:

Whipple w/ all clean margins and lymph nodes on 6/15/2022
Clean MRI and perfect CA19-9 on 7/15/2022
Negative Signatera on 7/27/2022
Negative Galleri on 10/3/2022
Negative Signatera on 10/26/2022
Tumor spotted on MRI at Whipple site (1.3 cm) and lymph node on 10/26/2022
EUS Biopsy negative on 11/1/2022
Positive Guardant 360 on 11/14/2022
Positive Signatera on 12/1/2022
Tumors confirmed growing (2.1 cm) by MRI and rapidly increasing CA19-9 on 12/17/2022

So... it managed to hide from 3 DNA-based tests (two Signateras and one Galleri) before being detected on MRI, and even managed to hide from the EUS biopsy despite the rapid growth from zero in mid-July to 1.3 cm at the end of October. Rising CA19-9 on tests in that span was my biggest hint of recurrence. I was surprised and disappointed the DNA tests didn't pick up on the tumor within 3 weeks of the MRI detection (and especially the biopsy that same week!). Those let to about 7 weeks of delay in my starting treatment for the recurrence.

Anyway, I'm really interested to hear how your Galleri report turns out and exactly when it was done in your overall time line. Of course, I'm hoping you get a good, true negative out of yours!!!

gamaryanne | @gamaryanne | Sep 3, 2023

I was diagnosed with very small lesion via MRI pancreas protocol and Ct with contrast-pancreas protocol.
While I have done Signatera, I am consistently reminded it can provide a false negative.
I am one of the lucky ones in that it seems to track with my CA 19-9.
Be sure you are meeting with physicians that live and breathe this disease. They aren’t too easy to find but pancan.org can help you find these people in your area. Lastly-don’t let stress create it!!

wellandwhole | @wellandwhole | Sep 5, 2023

In reply to @markymarkfl "@wellandwhole , Yes, I got a false negative from Galleri. My PC in particular seemed to..." + (show)

Thank you so much. I am sorry you had to go through all of that. I am really tired of playing medical needle in a haystack. 😅 It has been a long and painful journey in more ways than one, but I have faith that we will figure this out and I will have a full life ahead of me!

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