High or Fluctuating Chromogranin A Level: What does it mean?

Posted by kaforester3 @kaforester3, Apr 24, 2020

I’m not sure if I’m in the right place or not but I started this conversation here bc my Levels were so high. Has anyone ever had levels that high and what did the doctor say was wrong with you? I’m kind of freaking out bc they are jumping right in and sending me to get a octreotide scan in the next week. Someone please help me because the GI doctor isn’t saying anything.

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

@hopeful33250

Hello @kaforester3,

I can understand your concerns, especially when your doctor does not give you much information. While your levels are high there are many reasons, other than neuroendocrine tumors. In order to have a full picture, your doctor should also order a 24-hour urine test (5HIAA) as well as a serotonin blood test. It would be a good idea to inquire if your doctor would do these lab tests as well.

From what my GI doctor has told me that the Chromogranin A Level can be high if you take proton pump inhibitors (meds like Prilosec, etc.). Also, liver, kidney, or heart problems can also raise the CgA levels.

I have had surgery for 3 NETs in the digestive tract and my CgA levels have been in the 400's but the other tests have been normal and the EGD has also been normal.

I would encourage you to communicate with your doctor by the patient portal or by phone and inquire about these other lab tests and ask about other reasons for the elevated levels.

Have you had any specific symptoms that led to your doctor checking the Chromogranin A-Levels? I'm thinking of symptoms like diarrhea, weight loss, etc.

Jump to this post

My CGA reading just came back 402.6....after finding a Neuroendocrine Tumor during a colonoscopy. Probably looking at surgery too - were your NETs malignant?

REPLY
@terrycooper

My CGA reading just came back 402.6....after finding a Neuroendocrine Tumor during a colonoscopy. Probably looking at surgery too - were your NETs malignant?

Jump to this post

Hello @terrycooper and welcome to the NETs support group on Mayo Connect. It looks like the NETs in the colon are a new diagnosis for you. Is that correct? Most of us with NETs had no symptoms before the diagnosis of NETs. Is that true for your as well?

Mine were found during a routine upper endoscopy. Since 2003, I've had three surgeries. NETs are a rare cancer and don't always fit the jargon or path of other types of cancer. All three of my surgeries were in the same area of the upper digestive tract. As of now, there does not seem to be any metastasis to other organs.

If you've read or researched about NETs you probably already know that they are often slow-growing and people live with them for years, even when there is a metastasis. Has it been suggested that you have a scan to look for metastasis? Other than the CgA levels, what other types of tests have been done?

Here is a list of possible tests (from the Carcinoid Cancer Foundation website) that can be used for the diagnosis and follow-up for NETs patients, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/

Will you be seeing a surgeon in the near future?

REPLY
@terrycooper

My CGA reading just came back 402.6....after finding a Neuroendocrine Tumor during a colonoscopy. Probably looking at surgery too - were your NETs malignant?

Jump to this post

Thank You!

It was found during an endoscopy on November 22, 2023. Within 5 days they had me lined up to see a Hematologist Oncologist right away and a Surgical Oncologist. Along with my Gastro Dr sitting in.

Pet Scan, CT Scan and a Chest Xray to take place next week.

Blood work indicates CGA is high.

I have been sick about a year...I have been misdiagnosed with Long Covid.

Hopefully, it's contained like yours.

Thanks so much for the information.

REPLY
@terrycooper

Thank You!

It was found during an endoscopy on November 22, 2023. Within 5 days they had me lined up to see a Hematologist Oncologist right away and a Surgical Oncologist. Along with my Gastro Dr sitting in.

Pet Scan, CT Scan and a Chest Xray to take place next week.

Blood work indicates CGA is high.

I have been sick about a year...I have been misdiagnosed with Long Covid.

Hopefully, it's contained like yours.

Thanks so much for the information.

Jump to this post

Dear Terry,
My spouse was miss diagnosed for years with GERD. He has a "heavy tumor load". He required surgery to by pass a large tumor. This helped. They put him on a Lanreotide shot that has stabilized the cancer for the moment. Unfortunately, he has had complications from both the surgery and side effects of the drug. But it has been the best option for him at this point.
My advice would be to take one day at a time as it gets overwhelming. There are good treatments available.
Wishing you all the best.

REPLY
@ginnyos

Dear Terry,
My spouse was miss diagnosed for years with GERD. He has a "heavy tumor load". He required surgery to by pass a large tumor. This helped. They put him on a Lanreotide shot that has stabilized the cancer for the moment. Unfortunately, he has had complications from both the surgery and side effects of the drug. But it has been the best option for him at this point.
My advice would be to take one day at a time as it gets overwhelming. There are good treatments available.
Wishing you all the best.

Jump to this post

Thank You...I'm staying optimistic because they say it is such a slow growing tumor. And, one day at a time.

Thanks Again

REPLY
Please sign in or register to post a reply.