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Hello, good afternoon. My name is Gustavo. I am from Buenos Aires, Argentina. My wife had an ACTH-secreting neuroendocrine tumor removed, resulting in ectopic Cushing's syndrome. He is currently totally normal from the cushing issue, all his ACTH and Cortisol values are normal. Normal potassium, normal blood pressure, and normal blood sugar. She has been under routine check-ups for a year, she has not had any additional treatment.
Chromogranin A tests give it a bit high, 169 (0-100). Negative contrast computed tomography and negative GA68 PET scans were performed. The oncologist doesn't worry much about that chromogranin value. Is there anyone in the group who has had this happen to you? Do you suggest that I asked the oncologist if she needs any kind of treatment? I'm not worried but if I need to take care of this issue, my wife doesn't want to read much or know much about it. Thank you very much, I hope you are all well. Best regards
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Gustavo1975, there are other things that can cause an elevated Chromogranin A (such as the patient having recently taken Prilosec). And there are other tests that can be done - such as a 24 hr HIAA urine. Her Chromogranin A level is actually not that high.
I think you have answered your question when you asked if you should speak with the doctor about possible further testing or treating. Obviously you have concerns and the person to help answer those concerns is the doctor. And if you're not comfortable with what her doctor says, maybe it would be time for a second opinion.
Being educated about a situation gives one power to deal with it. Maybe her doctor will agree to repeat the test, do a different test, etc. In other words, make a plan for close surveillance. You all need more answers.
We can't give you medical advice, but offer some things to think about so you can make better decisions.
Please check in and let us know what happened.