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

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?

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?

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.

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.

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

Thanks Again

@emilyliz16 I am in the same boat right now. I was checking my hormones and my CgA came back 200 (upper limit 100). How you doing? I am really stressed

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Hello @anxious88 and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. From your post, I see that you are concerned about the elevated CgA numbers. Please know that CgA levels can be elevated due to many reasons. Other health factors, as well as medications can raise the CgA levels. By way of example, my CgA numbers are usually in the upper 300's but there does not appear to be any new NETs.

I look forward to learning more about you. As this is your first post, please share as you are comfortable doing so, I bit about the reason for the CgA test. Have you had a diagnosis of NETs/carcinoids? What symptoms are you currently experiencing?

@anxious88 i was taking Prilosec before my test and that also caused a high result. My endo did tell me it can be high for many reasons. I have had extensive blood test and she is not concerned with the high number. Also stress can cause elevated numbers which at the time I was beyond stressed and was experiencing heavy anxiety. Outside of that I have not had any other symptoms … I find googling too much gets me in a bad head space . The CGA test also needs to have other factors. I hope this helps and honestly it numbers are okay mine were close to 600 and she also told me with the amount of testing I have done and all other factors made that high.

Dear all, I am in the same boat. My CgA test came back quite high - 475.
All other blood tests are normal.
I am scared to death.
I have a MRI appointment on Monday morning. Everything came so sudden and it's really hard for me to cope with the news.
I have glomerulonephritis but the kidney function is somewhat normal.
I have some fluctuations in the blood pressure but my GP thought they are most probably due to post Covid.
I understand now that flushing is another symptom and yes from time to time I have it but it's over the whole body and not just the face and I thought it is due to peri menopause..

Hello @bestrong and welcome to the NETs discussion group on Mayo Connect. If you read the posts in this group, you will find a lot of information about the different reasons for an elevated CgA. Many medications or other health problems can cause an elevation in the test results. There usually is not just one test that can diagnose any disorder. There needs to be a combination of factors involved.

As this is your first post, besides the flushing, what other symptoms were you having that led to the CgA test?