More Tests Required?

Posted by dmac70 @dmac70, Dec 24, 2023

For the last 4 weeks I have been suffering from a lot of symptoms associated with pancreatic cancer ( except for the jaundice & itching) so my gastroenterologist ordered a CA19 -9 blood test and a CT scan.
Fortunately, both came back as normal. With those tests combined coming back as normal, should l/do I need to request other test options since my symptoms continue to persist or are the completed tests I did, enough to clear me of pancreatic cancer.
Thanks in advance for any advice.

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Do you have any close family members who have had pancreatic cancer?

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@katiegrace

Do you have any close family members who have had pancreatic cancer?

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Hi Katie,
Thank you for your reply.
No, my father died of colon cancer.
Had a colonoscopy done first before the pancan tests (CA19-9 and CT scan) which also came back clear.
However, after being constipated for the 1st time in my life , the symptoms of pain in the stomach and groin (constant) and the back ( comes and goes) , ribbon shaped stools that can either contain small amounts of blood , white mucus, can be pale in color and float have persisted for approx. 5 weeks now.
The other symptoms I was experiencing after the initial constipation of nausea and loss of appetite have seemed to have fortunately disappeared in the last week.
Not sure if I need to be persistent and request more tests (as my body is telling me something is not right) or except my gastro’s explanation for the persistent symptoms listed above as just being the aging process.

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Hello, sorry for all your troubles. I was there so I know how painful and frustrating it can be. Be persistent with your drs until you’re satisfied. I was told my pain was diet related so I tried the FODMAP diet. Then when I became jaundice they did a ct and found the pancreatic tumor.
You know your body so keep asking questions until you get answers!

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@dmac70 , I don't recall if you've had a germline test like Invitae done to identify any inherited mutations that might put you at risk for PC or other cancers, but that's one test I would request. It might help narrow the focus of what you watch for in the future.

Also, you might consider the Galleri multi-cancer panel test from Grail. It can detect DNA from about 50 different tumor types and flag something other than pancreatic cancer as significant. It's not FDA approved, costs about $1000 out of pocket, and is not guaranteed to detect anything in particular. It failed to detect my PDAC recurrence, and your mileage may vary, but it's an option.

It has been noted here before that sometimes CT will not catch "flat" tumors very well, so there is that to keep in mind. If you're following up on things, PET imaging might be a good idea later (or sooner if Galleri returns a positive).

It has also been noted here that pancreatic tumors do not always express CA19-9, so you might ask for a more generic biomarker test like CEA at your next appointment. I can't remember the name of the syndrome in which people don't express CA19-9, but it would be interesting to know if you are one of them. If you had that test/result, it would help you focus future monitoring by more effective methods.

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@dmac70

Hi Katie,
Thank you for your reply.
No, my father died of colon cancer.
Had a colonoscopy done first before the pancan tests (CA19-9 and CT scan) which also came back clear.
However, after being constipated for the 1st time in my life , the symptoms of pain in the stomach and groin (constant) and the back ( comes and goes) , ribbon shaped stools that can either contain small amounts of blood , white mucus, can be pale in color and float have persisted for approx. 5 weeks now.
The other symptoms I was experiencing after the initial constipation of nausea and loss of appetite have seemed to have fortunately disappeared in the last week.
Not sure if I need to be persistent and request more tests (as my body is telling me something is not right) or except my gastro’s explanation for the persistent symptoms listed above as just being the aging process.

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I am glad there are others giving their thoughts on this.
I would listen to your gut instinct. Perhaps a 2nd opinion would be good?
Blood in the stools and floating stools would be a concern for me.
My symptoms were floating stools, itching in trunk area, throwing up after eating, severe stomach pain, pain in upper abdominal area, dark colored urine, pale stools. Doctors highly suspected pancreatic cancer after they saw a mass on my pancreas, which was seen on an abdominal CT scan.
If your dad, aunts, uncles, or cousins have not had pancreatic cancer, that is encouraging.
Best wishes.

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A random add-on thought: The first actual symptom I might have attributed to PC was brittle fingernails, chipping all the time. I suspect my ability to properly take in and use nutrients from food might have been behind it. Second after that was elevated liver enzymes -- another cheap and simple blood test. It made sense after my bile duct was blocked enough to cause jaundice, but preceded that by about 2 months.

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I was in the same situation only a few months ago. I had symptoms that matched those of colon cancer and PC. I had abdominal pain, back pain, diarrhea with thin stools but never blood, excessive gas and burping. I also lost some weight without trying and my blood hemoglobin dropped a bit. I had stool and blood tests, CT, CEA test and then colonoscopy which all were normal. With persistent symptoms and the thought of PC, I had another CT (to be done on the pancreatic protocol) and it was normal. After extensive reading and search, I learned that some pancreatic tumors can be missed on CT and need MRI to be detected, I had an MRI scan and endoscopic ultrasound to finally rule out the possibility of PC and they were negative for PC, fortunately. I am still having the same symptoms, without any diagnosis. Told this could be just IBS or digestive disturbance related to menopause.

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Keep after it. Stool tests for fat could be helpful. Pancreatic insufficiency might be of benefit.

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