chromogranin A test

New Test Results Too
I just read your comments and levels. My GI doctor said normal was 7 to 15. Yours is at 26. Mine came back at 58... YIPES. I've had an upper and lower GI done. They are now getting approval for them to give me a camera the size of a pill so that they can see my lower intestine. That should take place in a couple of days from now.

You are right. The information online is more clinical. I need it in plain English. Try looking up Chromogrannin A which is the hormone involved with all of this. Although the doctor said that 80% of the tumors are begnein I'm still concerned about the 20%. He also said that this was rare. Figures right?

Feel free to contact me if you want to talk more about it.

Chromagranin A levels
Hi - I was diagnosed in 2006 with ileal carcinoid (malignant with positive lymph nodes). My Chromagranin has never been considered "high" - but beware that the level considered as high differs depending on the lab where the test is run. My doctors who diagnosed me also said that most tumors are benign - mine was not. They then said I was "cured" when they removed my primary tumor and positive nodes - and I was not. I had surgery to remove numerous tumors from my liver 4 years after my initial diagnosis. I'm not trying to scare you, but please seek out the experts in determining your care. There are resources available to assist you with finding the right doctor (carcinoid.org or caringforcardinoid.com). I still am doing well and lead an active life at 42 years of age, but I have learned the value of seeing an expert through my own experiences. There is no "one size fits all" in medicine - each person is different, and needs a doctor who understands this.

jensor06 said:

Confusing lab results
So, I just had the chromogranin A test done. They sent me my results and, while I know a high level is not a good sign, what does it mean when your level in below what is considered normal?
I called my doctor and they won't see me for a week.
My results said <1 and was in big, bold, red letters. If a low level is good, why mark it in bold red? None of my other results were marked in red.
Anyone have any idea? I tried called Quest and they just said to discuss it with my doctor.</p>

Any updates on this?
What did your doctor say? Did they have other tests to use as a baseline? I am curious as this test was something that was going to be used for me or was used....but was always fantastical and mystical.

sunny121 said:

Chromagranin-A Test

I am now also at the beginning of getting tested. In July my serum chromogranin A levels were 62. Now after being repeated, they have jumped to 78. I do have a small cyst in my pancrease plus a pituitary tumor and other small cysts/tumors. All are too small to biopsy. 

In July I was told lets wait and see what happens in 3 months when we repeat the test. Now I am being told. Well your markers have gone up but since everything that we can see is too small to biopsy, we cannot get a clear diagnosis.

So like everyone, I don't know what is going on. I know the normal reference range is 0-15. In 4 months, my markers went up more than the reference range so YES i AM CONCERNED. I was told that the good news is that carcinoid cancer is very slow moving. Yet, the doctor would not definitively say that was what I had.

His only statement was maybe he should refer me to UCLA for further testing.  That was a month ago and I have heard nothing.

Anyone have any experience with this, please let me know or suggestions-thanks

sunny121

The referral to UCLA leads me to believe you're in the Southern California area.  An elevated CgA is an indication of carcinoid cancer; however, there are other markers and a scan called an octreoscan that can more definitively tell you if you have carcinoid cancer.  You will want to know if it's a well-differentiated/slow growing, well-differentiated/moderately growing, or poorly differentiated/aggressive type.  I'm not sure if you need biopsied tissue to figure that one out, but just knowing whether or not you have carcinoid cancer would be a good starting point. To make a long story short, I was misdiagnosed in June 2010 with stage IV cholangiocarcinoma (CA 19-9 was 2800+).  Fast forward to May 2012: after a failed liver resection and a biopsy of cancerous lymphnodes, it was now believed that I had two types of rare cancers, one being neuroendocrine carcinoid cancer.  My CA 19-9 was still very high, and my oncologists started monitoring my Chromogarnin A (at its highest it was 78; it's now at 13).  After my sister pushed for 6 months to have me see a specialist and get an octreoscan, it was decided in January 2013 that I had pancreatic neuroendocrine carcinoid tumor all of this time and that we needed to proceed with treatment for that.  I never had cholangiocarcinoma.  The "renowned" City of Hope was in on the original misdiagnosis, giving a second opinion back in 2010 confirming the original diagnosis of cholangiocarcinoma (my blood boils whenever I see a billboard or receive advertisements touting what a wonderful cancer hospital they are).  Didn’t see that one coming from such a respected facility.  

I now have three oncologists that oversee my care.  One is my primary oncologist, who consults with my two specialists to decide the best treatment and path for me.  One is Dr. John Daniels at Norris-USC who I just love.  He's the liver specialist that did special procedures (transarterial chemoembolization, or TACE) on my liver growths, and who I believe truly helped me survive this long.  He actually suspected carcinoid cancer back in December 2010, but his hands were tied because my insurance wouldn't pay for his pathology department to look at my biopsied samples again (his was considered a third opinion).  He would have proceeded with the TACE using the same chemo drugs regardless of the type of cancer, so he proceeded as normal.  He's also the one who gave me hope that while I would never beat the disease, I could still be brought as close to remission as possible which would prolong my life.  My other specialist is Dr. Edward Wolin at the Samuel Oschin Cancer Center located at Cedars Sinai in West Los Angeles.  Though I would prefer to be under Dr. Daniels’ care, Dr. Wolin is the "expert" with carcinoid cancers.  If you're close to the Southern California area, I suggest that you get authorization to get Dr. Wolin's opinion.  Before you go, DEMAND to get some other tests done, especially the octreoscan.  If your oncologist suspects carcinoid cancer, he can get authorization from you insurance to have one done.  If he refuses, find another oncologist who cares more about you and the fact that you have cancer and cares about getting you on the right path.  You have to be your own advocate, or have someone close to you advocate on your behalf.  My sister is the one who researched both of my cancers and sought the proper treatments and doctors for me.  If she hadn't demanded that I get targeted scans/tests and see specialists, I wouldn't be alive today.  If Dr. Wolin/Cedars Sinai accepts the type of insurance you have, you may want to consult with him first if your current oncologist is dragging his feet about authorizations, or even transfer your care to him.  My cancer started in the pancreas, and metastasized to my liver and bones before entering my lymph nodes.  I have the well-differentiated/moderately growing type, and am currently being treated with a monthly shot of Sandostatin LAR and a daily dose of 10 mg of Afinitor.  The Sandostatin LAR is used to control and possibly shrink the cancer, and the Afinitor is used for late-stage pancreatic neuroendocrine cancer to shrink the growths.  Fortunately I've held up well in spite of being on some type of chemo or another for 3.5 years.  It hasn't always been easy, but I'm thankful that my doctors and support team (I have great family and friends) haven't given up on me!  The website carcinoid.org list specialists by state if West Los Angeles is too far for you to travel; it also has some good information regarding carcinoid cancers. 

Sorry to be so long-winded.  I hope this helps and doesn’t confuse you more.   

 

chromogranin A ranges

The chromogranin A test now has new ranges.  If you were 10 before, and now 125, how do you interpret this?

 

fredlorey said:

chromogranin A and 5-HIAA

I was diagnosed with carcinoid syndrome 4 years ago and a large tumor in my cecum was removed but it had already metastisized to my liver where they were watching their growth etc so I have chromogranin A every other month and 5-HIAA so I may be able to clear up some of the questions.  The reference range for chromogranin A is 15 so if you are below that it's in the normal range.  I wouldn't worry at all about an ultra low value - wish I had it!  chromogranin can be quite variable and subject to diet, prescription drugs etc.  Mine has been all over the place for 4 years with the lowest being 36 and the last one when the MRI showed two of the liver tumors were growing and we needed to do a chemo-embolization was sky high over 100, so a value that high is of concern but the lower values some of you quoted are not a big cause for concern as long as you are being monitored.   urine 5-HIAA is somewhat more immune to outside influences so is a better marker.  That two went sky high when the tumors grew (over 100) when it had been 40-60 for 4 years.    So they did a chemo-embolization which maps the vein feeding the tumor, and then they inject little beads with chemo in them and inject them so they go straight to the tumor.   So a month after this procedure my chromogranin went down to 30 (lowest it's ever been but still elevated) and the 5-HIAA went down to 30, also the lowest ever but still elevated.  So I'm not a Dr. but have learned a lot about these values from my Drs.  I wish they had gone to normal range like some of you but regardless its a big improvement so it looks like most of you are doing well.

Thank you for sharing your

Thank you for sharing your experience. I believe that while your experience it true for you it may not be for others. I was told it is possible to have a carcinoid tumor even if the concentration of CgA is normal. Also the lab tests for CgA are not FDA approved so the labs have different tests so they cannot be compared to each other. You have to test with the same labs, same test every time to compare your own results. I was also told someone with symptoms may still have a carcinoid tumor even if the concentration of 5-HIAA is normal. The person may have a carcinoid tumor that produces seritonin it intermitently or one that  doesn't produce serotonin at all. 

Its all so confusing. Seems that everyone is different depending on their tumor(s).

 

 

Seandkat said:

Thank you for sharing your

Thank you for sharing your experience. I believe that while your experience it true for you it may not be for others. I was told it is possible to have a carcinoid tumor even if the concentration of CgA is normal. Also the lab tests for CgA are not FDA approved so the labs have different tests so they cannot be compared to each other. You have to test with the same labs, same test every time to compare your own results. I was also told someone with symptoms may still have a carcinoid tumor even if the concentration of 5-HIAA is normal. The person may have a carcinoid tumor that produces seritonin it intermitently or one that  doesn't produce serotonin at all. 

Its all so confusing. Seems that everyone is different depending on their tumor(s).

 

 

Chromogranin A

I agree. My CgA was 36, then 64, then 99, then 115, and now 1536. Every time the 5-HIAA was just over normal and always under 10. Getting an octriooctrscan or Gallium66? or whatever itsit's called hopefully next month

Normal value range Chromogranin A

Last year my test results was at 53 and normal range was <15ng/ml. Currently it is at 71 but lab normal range is at 25-140 ng/ml.

Carcinoid.org normal value <39ng/ml.  I get Flushing really bad and last 3-4 hours. I am confused with different normal values.

Last year I had a Dotate pet scan, MRI, cat scan, endoscopy and colonoscopy was done and couldn’t find any thing. Some doctors say the

Carcinoid is dormant at this time. What is your opinion on this?  Thank You!

Lady2 said:

Normal value range Chromogranin A

Last year my test results was at 53 and normal range was <15ng/ml. Currently it is at 71 but lab normal range is at 25-140 ng/ml.

Carcinoid.org normal value <39ng/ml.  I get Flushing really bad and last 3-4 hours. I am confused with different normal values.

Last year I had a Dotate pet scan, MRI, cat scan, endoscopy and colonoscopy was done and couldn’t find any thing. Some doctors say the

Carcinoid is dormant at this time. What is your opinion on this?  Thank You!

Chromogranin A

I too am having the same issue. My lab also says normal values are 25-140 ng/ml. My test came back at 128. My doctor says it is in the normal range. I would love to hear your experience since your original post. 

RobLee said:

Chromogranin A

I had the CgA blood test a couple weeks ago after a CT found a golf ball sized mass in my small bowel mesentary.  My gastroenterologist said my CgA was elevated and the mass is most likely carcinoid, and sent me to a surgeon to do a biopsy.  The surgeon said the only way to determine the nature of the mass would be to remove it.  So I am scheduled for surgery in a month.

In the meantime I have been doing lots of reading about neuroendocrine tumors (NET) and a new radiotherapy named Lutathera.  I have a call in to Moffitt cancer center and am waiting for them to call back, but so far I don't even know for sure that this thing is actually cancer. I see a lot of people posting questions here and not a whole lot of answers, so I guess I shouldn't feel so alone.  I just finished radiation for another cancer less than a year ago, and now this.

I hate the waiting game.

Lutathera

My husband has neuroendocrine pancreatic cancer. He was diagnosed in January 2016. The tumor was wrapped around the artery, so surgery was not an option. He did six rounds of chemo and a month of radiation. His chromogranin numbers have been going up steadily since January, but every biopsy/scan has been negative until two weeks ago. We met with the oncologist yesterday and he is recommending Lutathera.  Waiting for a call from Excell Diagnostics toset up treatment. Would love to hear from someone who has undergone Lutathera injections.