My Chromogranin numbers are high. What is a more accurate test?

By any chance do you take PPI’s? (Pepcid, Zantac etc) Proton pump inhibitors will increase chromogranin.

It’s my understanding from talking to my Mayo Clinic oncologist that a PET – CT DOTATATE scan is the gold standard for determining the location and size of neuroendocrine tumors (NETS). Have you had such a scan recently?

Also, are you receiving care from a center of excellence that deals regularly with NETs such as Mayo Clinic or have you received a second opinion from such a center of excellence? If not, I’d highly recommend that.

I wish you all the best!

Hello @tammyd and welcome to the NETs support group on Mayo Connect. After having surgery three years ago, your concern about the high chromogranin numbers is certainly understandable. On Connect, we have another discussion on high CgA numbers. Here is a link to that conversation,
--High or Fluctuating Chromogranin A Numbers What Does It Mean
https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/
As mentioned by @lindabees, there are many medical factors that can affect this test result, including the use of PPI medications as well as other health issues. When diagnosing NETs or any other health condition, it is important to look at various test and scan results. Here is a list of diagnostic tests that are used to both treat and follow up with NETs from the Carcinoid Cancer Foundation,
--Follow Up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
As @retiredinkazoo mentioned, it is important to have a consultation with a NET specialist. Here is list of NET specialists throughout the country,
--Find a doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
It is wise to have at least one consultation with a NET specialist, either a virtual or in-person appointment, to put your mind at ease that you are on the right road with your follow-up care.

What has your doctor said about these results? What type of follow up is being planned?

Thank you for all the information, this does give me a clearer understanding of what test need to be done.
I haven’t seen my oncologist yet.

Let me know if you have any questions prior to meeting with the oncologist, @tammyd.

Here is a great discussion on how to make the most out of your first appointment with a specialist. It might provide you with some ideas when you meet with the oncologist.

--Keys to a Successful Doctor's Appointment
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
Do you have an appointment scheduled already?

No, I'm not on any mediacation.

Hi @tammyd, I thought I'd check in. Have you had a chance to meet with your oncologist or make an appointment to discuss your test results? How are you doing?

I have not meet with an oncologist. I got all my medical records an found out that 4 ft were removed from the ileum.
I am working with a nutritionist to help correct the bacteria in my gut and inflammation.
After I have achieved this, I plan on using a nutritional plan to heal my body from cancer.
At this point I feel the medical community doesn’t have much to offer me.