1. < Neuroendocrine Tumors (NETs)

Cromogranina A

Posted by gustavo1975 @gustavo1975, Feb 6 12:16pm

Hola buenas tardes. Mi nombre es Gustavo. Soy de Buenos Aires , Argentina. A mí esposa le extirparon un tumor neuroendocrino secretor de ACTH, lo que produjo síndrome de cushing ectopico. Actualmente está totalmente normal del tema cushing, todo sus valores de ACTH y Cortisol están normales. Potasio normal, presión arterial normal y azúcar en sangre normal. Actualmente hace un año que está con controles rutinarios, no tiene ningún tratamiento adicional.

Los analisis de cromogranina A le dan un poco altos, 169 ( 0-100 ). Se le realizó tomografias computadas con contraste negativas, pet tc con ga68 negativo. El oncólogo no se preocupa mucho por ese valor de cromogranina. Hay alguien en el grupo que le haya pasado esto ? Sugieren que le pregunté al oncólogo si necesito algún tipo de tratamiento ? No estoy preocupado pero si necesito ocuparme de este tema, mi esposa no quiere leer mucho ni saber mucho del tema . Desde ya muchas gracias, espero que uds estén todos bien. Saludos

Escribí en español, espero sepan entender cuando hagan la traducción.

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

gustavo1975 | @gustavo1975 | Feb 7 11:49pm

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

REPLY
1 reply
kbtexan | @kbtexan | Feb 9 8:49am

Having a high count on Chromogranin is indicative of a Neuroendocrine tumor, regardless of whether or not it came up on a Gallum 68 test. There are many different types of this test and one may not be adequate or accurate as another. I would suggest starting a regiment of Sandostatin ( Octreotide Acetate) if your wife's symptoms are in line with this kind of tumor. Look up Carcinoid.org to find the latest symptom list and should your wife have these kinds of problems, I would ask to be put on 30mgLR Sandostatin to see if her symptoms improve.
Best of luck
Ken

REPLY
1 reply
phyllisden | @phyllisden | Feb 10 9:35pm
In reply to @gustavo1975 "Hello, good afternoon. My name is Gustavo. I am from Buenos Aires, Argentina. My wife had..." + (show)
@gustavo1975

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

Jump to this post

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.

REPLY
1 reply
gustavo1975 | @gustavo1975 | Feb 10 10:08pm
In reply to @phyllisden "Gustavo1975, there are other things that can cause an elevated Chromogranin A (such as the patient..." + (show)
@phyllisden

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.

Jump to this post

Hello . how are you? thank you very much for responding. My wife has a date for a new analysis for February 1, anyway, this Wednesday we have an appointment with the endocrinology team who detected this problem and also guides us. We'll see what they tell us. Maybe we could ask them if they can order any tests to detect hormones in addition to chromogranin or what they recommend.

And yes, we are analyzing the possibility of getting a second opinion.

My wife does not have any symptoms.

Clearly I will inform you when I have news. All of you here are very helpful to us who are just venturing into this new life.

Thank you very much and health to all.

Sorry for my English

REPLY
jenniferrasigade | @jenniferrasigade | Mar 18 6:17am
In reply to @kbtexan "Having a high count on Chromogranin is indicative of a Neuroendocrine tumor, regardless of whether or..." + (show)
@kbtexan

Having a high count on Chromogranin is indicative of a Neuroendocrine tumor, regardless of whether or not it came up on a Gallum 68 test. There are many different types of this test and one may not be adequate or accurate as another. I would suggest starting a regiment of Sandostatin ( Octreotide Acetate) if your wife's symptoms are in line with this kind of tumor. Look up Carcinoid.org to find the latest symptom list and should your wife have these kinds of problems, I would ask to be put on 30mgLR Sandostatin to see if her symptoms improve.
Best of luck
Ken

Jump to this post

A high chromogranin A can mean a lot of things. It can be high because of medications you take or be indicative of other conditions. Gallium PET scans and tissue biopsies are the sure way to know. The chromogranin A can shoot up over anti-reflux medications.

REPLY
1libby | @1libby | Mar 19 11:44am

My chromogranin has been over 1200 for more than 3 years. Although I have been alarmed about it, my oncologist recently ordered a PET and a CT with contrast that showed basically no change in the pancreatic NET that is responsible for the secretion. While I would prefer for the tumor to be removed, I understand that it is located in such a place that I would have life changing results that might be worse than managing the gastrointestinal symptoms now that are reflected in the high chromogranan and gastrin that are both high. I have learned that the oncologists at Mayo are excellent at monitoring each blood chemistry result but you can always send a message in your health portal about this test result.

REPLY
1 reply
gustavo1975 | @gustavo1975 | Mar 19 12:56pm
In reply to @1libby "My chromogranin has been over 1200 for more than 3 years. Although I have been alarmed..." + (show)
@1libby

My chromogranin has been over 1200 for more than 3 years. Although I have been alarmed about it, my oncologist recently ordered a PET and a CT with contrast that showed basically no change in the pancreatic NET that is responsible for the secretion. While I would prefer for the tumor to be removed, I understand that it is located in such a place that I would have life changing results that might be worse than managing the gastrointestinal symptoms now that are reflected in the high chromogranan and gastrin that are both high. I have learned that the oncologists at Mayo are excellent at monitoring each blood chemistry result but you can always send a message in your health portal about this test result.

Jump to this post

Hello. Thank you for responding, and I'm sorry for what you're going through. My wife's tumor was surgically removed, with negative margins. T1N0M0. No infiltration into vessels or ducts. According to her oncologist, you're disease-free, with negative CT scans and a Ga68 PET scan also negative. The endocrinologist also said we should rest assured that everything is fine for now, but it's a bit difficult for us to be 100% calm. Best regards.

REPLY
Please sign in or register to post a reply.