I had NET removed at porta hepatis: CGA was 3886.

Posted by stevenkos @stevenkos, Jun 6 8:03pm

Dr tells me not to worry to much about Cga. After surgery labs, Cga went down to 518. Now After 4 months Cga up to 1356. I'm due for another DOTATATE PET scan head to mid thigh. The first one before surgery didn't show any uptake. I am concerned about another Net. Anyone else have this reoccurring tumor? Thanks, any comments appreciated.

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

can understand why that increase would make you nervous. A rise in CgA from 518 to 1356 certainly gets your attention, but it's encouraging that your doctor is not overly concerned and has ordered another DOTATATE PET scan.

One thing I've learned from talking with NET patients is that Chromogranin A can be influenced by many things besides tumor growth, including medications such as proton pump inhibitors, kidney function, inflammation, and other medical conditions. That's why many NET specialists place more emphasis on imaging and overall trends than on a single CgA value.

The fact that your first DOTATATE PET scan showed no uptake is also an important piece of information. Hopefully the upcoming scan will provide some clarity.

As for recurrence, many NET patients do experience recurrence after surgery, while others have elevated tumor markers for years without clear evidence of active disease. That's one reason these scans are so important.

Please keep us posted on what the DOTATATE PET scan shows. Wishing you good results and some peace of mind while you wait.

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Profile picture for mcharlesfrancis @mcharlesfrancis

can understand why that increase would make you nervous. A rise in CgA from 518 to 1356 certainly gets your attention, but it's encouraging that your doctor is not overly concerned and has ordered another DOTATATE PET scan.

One thing I've learned from talking with NET patients is that Chromogranin A can be influenced by many things besides tumor growth, including medications such as proton pump inhibitors, kidney function, inflammation, and other medical conditions. That's why many NET specialists place more emphasis on imaging and overall trends than on a single CgA value.

The fact that your first DOTATATE PET scan showed no uptake is also an important piece of information. Hopefully the upcoming scan will provide some clarity.

As for recurrence, many NET patients do experience recurrence after surgery, while others have elevated tumor markers for years without clear evidence of active disease. That's one reason these scans are so important.

Please keep us posted on what the DOTATATE PET scan shows. Wishing you good results and some peace of mind while you wait.

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@mcharlesfrancis
Thank you for the encouraging response. I am however stopping the 40mg omeprazole will be 2 weeks on 06 /13. prior labs, Liver and kidney functions, enzymes are normal. Ast /Alt are normal. Thanks @mcharlesfrancis. Will give a heads up after DOTATATE PET scan.

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Profile picture for stevenkos @stevenkos

@mcharlesfrancis
Thank you for the encouraging response. I am however stopping the 40mg omeprazole will be 2 weeks on 06 /13. prior labs, Liver and kidney functions, enzymes are normal. Ast /Alt are normal. Thanks @mcharlesfrancis. Will give a heads up after DOTATATE PET scan.

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@stevenkos Hi and welcome to Mayo Connect. I am curious. Why did you stop the omeprazole?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@stevenkos Hi and welcome to Mayo Connect. I am curious. Why did you stop the omeprazole?

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@tomrennie thanks for the welcome.
I understand that Proton pump inhibitors like Omeprazole will increase CgA. I stopped the drug for that reason. Today I have my DOTATATE scan. I'm hoping for no new Nets or uptake in the imaging.

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Profile picture for stevenkos @stevenkos

@tomrennie thanks for the welcome.
I understand that Proton pump inhibitors like Omeprazole will increase CgA. I stopped the drug for that reason. Today I have my DOTATATE scan. I'm hoping for no new Nets or uptake in the imaging.

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@stevenkos Good luck today. Please let us know how it goes ok?

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Profile picture for stevenkos @stevenkos

@tomrennie thanks for the welcome.
I understand that Proton pump inhibitors like Omeprazole will increase CgA. I stopped the drug for that reason. Today I have my DOTATATE scan. I'm hoping for no new Nets or uptake in the imaging.

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@stevenkos, any update? How are you doing?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@stevenkos, any update? How are you doing?

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@colleenyoung My DOTATATE PET scan shows a neoplastic tumor at the head of the Pancreas. MRI is scheduled for June 29th. My blood labs shows Cga in the normal reference range of 63 , down from 1356 after stopping Omeprazole for 2 weeks, Go figure? I don't know what to think at this point. I also have an appointment with Gastroenterologist surgeon July 2nd to discuss MRI results and what's next. Biopsy?

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Profile picture for stevenkos @stevenkos

@colleenyoung My DOTATATE PET scan shows a neoplastic tumor at the head of the Pancreas. MRI is scheduled for June 29th. My blood labs shows Cga in the normal reference range of 63 , down from 1356 after stopping Omeprazole for 2 weeks, Go figure? I don't know what to think at this point. I also have an appointment with Gastroenterologist surgeon July 2nd to discuss MRI results and what's next. Biopsy?

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@stevenkos Sorry to hear about the new tumor. Are any of your doctors NET specialists? Just curious.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@stevenkos Sorry to hear about the new tumor. Are any of your doctors NET specialists? Just curious.

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@tomrennie, the surgeon at U of Penn hospital that removed my lymph node NET at hepatis portis is well known. Very reputable Gastrointestinal. Everything is riding on the upcoming MRI results and biopsy. Specialist, I'm praying.

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Profile picture for stevenkos @stevenkos

@tomrennie, the surgeon at U of Penn hospital that removed my lymph node NET at hepatis portis is well known. Very reputable Gastrointestinal. Everything is riding on the upcoming MRI results and biopsy. Specialist, I'm praying.

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@tomrennie there is a review board of 6 cancer doctors that also looks at the test results before a final determination is made and my options. So it's a group effort on what is best for me.

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