Pancreatic Cancer Concerns: What tests are done for diagnosis?

Posted by sas2023 @sas2023, May 25 12:42pm

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.

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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If the doctors currently treating you have not ordered CA19-9 and CEA tests, I would question how familiar they are with pancreatic cancer. Those are very standard tests for pc. A small percentage of PC patients never show an elevated CA19-9, so a normal test is not definitive for absence of disease. Likewise, some other issues can elevate CA19-9 in the absence of malignancy. Pancanology's YouTube channel has a very good video on the value of CA19-9 testing and its shortcomings.

If you have a baseline HBA1c, I would also test for current values. Frequently diabetes (type 3c), weight loss and increased burping are seen prior to diagnosis.

PC is rare and the likelihood is that you don't have it, but I definitely understand your concern. My husband went through an extensive battery of tests, scans and ERCP's over the course of about 7 months before his was finally found after being referred to a pc specialist at an NCI Center of Excellence.

Good luck.

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@smurf343

If the doctors currently treating you have not ordered CA19-9 and CEA tests, I would question how familiar they are with pancreatic cancer. Those are very standard tests for pc. A small percentage of PC patients never show an elevated CA19-9, so a normal test is not definitive for absence of disease. Likewise, some other issues can elevate CA19-9 in the absence of malignancy. Pancanology's YouTube channel has a very good video on the value of CA19-9 testing and its shortcomings.

If you have a baseline HBA1c, I would also test for current values. Frequently diabetes (type 3c), weight loss and increased burping are seen prior to diagnosis.

PC is rare and the likelihood is that you don't have it, but I definitely understand your concern. My husband went through an extensive battery of tests, scans and ERCP's over the course of about 7 months before his was finally found after being referred to a pc specialist at an NCI Center of Excellence.

Good luck.

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Always get a pancreatic protocol ct scan! Regular ct Scans are a waste of time and money.

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Screening tests for pancreatic include MRCP, endoscopic ultrasound. Should be done by someone with excellent experience. CT should be done with pancreatic profile. Pancreatic center of excellence seems like the way to go. See the National Pancreas Foundation website, has a listing of the 150 centers of excellence in the US

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@sas2023, any update? Have you had further testing?

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@colleenyoung

@sas2023, any update? Have you had further testing?

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Thanks for the feedback and comments everyone. I did end up having my gallbladder tested via Hida Scan and it was underperforming from an effeciency perspective. As a result of conversations with the surgeon I did end up having it removed and so far haven't experienced any of the issues above. Since the pain was on the left side, and gallbladder issues are normally on the right, I knew there was a chance it may not be the issue, but so far so good. I'll follow up if the pain comes back or if there are any updates, but thanks everyone.

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@sas2023

Thanks for the feedback and comments everyone. I did end up having my gallbladder tested via Hida Scan and it was underperforming from an effeciency perspective. As a result of conversations with the surgeon I did end up having it removed and so far haven't experienced any of the issues above. Since the pain was on the left side, and gallbladder issues are normally on the right, I knew there was a chance it may not be the issue, but so far so good. I'll follow up if the pain comes back or if there are any updates, but thanks everyone.

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Hello. I went to an ER four mos. ago because for six weeks I'd experienced severe and persistent itching from soles to scalp; fatigue; loss of appetite (I dropped 14 lb in 6 weeks, mostly muscle); and yellowing of my skin, though I couldn't see it bc my apt. is so dark.

The jaundice and severe itching indicated liver problems, so the ER doctor ordered blood work (sorry that I can't remember specifics), scans, and a biopsy. The blood tests showed markers for a tumor, and the scans showed the tumor itself, at the head of my pancreas; the biopsy was also definitive. (The biopsy was performed in conjunction with the insertion of a stent in my bile duct, which was blocked because of the cancer; the excess bilirubin in my blood had caused the itching and the jaundice.)

***The scans also showed nodules on my lungs; this is a not-uncommon phenomenon with pancreatic cancer, so keep that in mind if for any reason you later think you might have pancreatic cancer.*** (The nodules suggest metastasis; mine will be assessed in a few weeks via scans — too small to biopsy.)

Fwiw, my symptoms were mild back pain, waist-level, right side; changes to my stool (an episode approx. every 3 weeks in which I felt intense pain in that spot, was constipated, and passed small bits of small-caliber stool). Unfortunately, I had no health insurance, and more than two years passed from the onset of symptoms to the diagnosis — my cancer is, unfortunately, advanced. It's *great* that you're making sure you're getting the tests you need, and I wish you a good outcome — good health and for many more decades.

One last thing: Don't be afraid to seek a second opinion at another hospital. It's your health and your life.

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@jk77

Hello. I went to an ER four mos. ago because for six weeks I'd experienced severe and persistent itching from soles to scalp; fatigue; loss of appetite (I dropped 14 lb in 6 weeks, mostly muscle); and yellowing of my skin, though I couldn't see it bc my apt. is so dark.

The jaundice and severe itching indicated liver problems, so the ER doctor ordered blood work (sorry that I can't remember specifics), scans, and a biopsy. The blood tests showed markers for a tumor, and the scans showed the tumor itself, at the head of my pancreas; the biopsy was also definitive. (The biopsy was performed in conjunction with the insertion of a stent in my bile duct, which was blocked because of the cancer; the excess bilirubin in my blood had caused the itching and the jaundice.)

***The scans also showed nodules on my lungs; this is a not-uncommon phenomenon with pancreatic cancer, so keep that in mind if for any reason you later think you might have pancreatic cancer.*** (The nodules suggest metastasis; mine will be assessed in a few weeks via scans — too small to biopsy.)

Fwiw, my symptoms were mild back pain, waist-level, right side; changes to my stool (an episode approx. every 3 weeks in which I felt intense pain in that spot, was constipated, and passed small bits of small-caliber stool). Unfortunately, I had no health insurance, and more than two years passed from the onset of symptoms to the diagnosis — my cancer is, unfortunately, advanced. It's *great* that you're making sure you're getting the tests you need, and I wish you a good outcome — good health and for many more decades.

One last thing: Don't be afraid to seek a second opinion at another hospital. It's your health and your life.

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Thank you for sharing your story. No one in this great country of ours with some of the best doctors on the planet should be without health insurance. Wish all cancer patients could get the kind of treatment I have been getting at MSKCC. World class excellence, compassion, and respect

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@gardenlady1116

Thank you for sharing your story. No one in this great country of ours with some of the best doctors on the planet should be without health insurance. Wish all cancer patients could get the kind of treatment I have been getting at MSKCC. World class excellence, compassion, and respect

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Thanks for your reply. I respectfully about one thing: Any nation that denies universal coverage cannot be considered a great one (and this isn't the only area in which the US consistently puts profit above people to a degree that other developed democracies don't). I hope I haven't offended you, and I apologize if I have. Thanks again for your encouraging reply.

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I could not agree with you more. I am not sure if it was on this group, but someone reported being without health insurance for two years and wasn't treated during that time. This is tragic but happens to others with life threatening conditions, not just cancer.

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