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chromogranin A test

flapjack
Posts: 3
Joined: Nov 2009

Hi,
I am glad to find this site, very helpful. I am currently being worked up for pheo/carcinoid/neuroendocrine... Have classic symptoms. My chromogranin A came back elevated from Quest diagnostic:

Chromogranin A SERUM 26.0 (H) ng/mL 1.9-15.0 (normal range per lab)

What does this mean, does not seem very high, are there others out there and what were your levels? I don't find much on the internet as to how high this is in patients with different neuroendocrine tumors. Thank you

bbtaxman
Posts: 1
Joined: Apr 2011

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.

flapjack
Posts: 3
Joined: Nov 2009

Thanks for the reply, I too am lined up for endoscopy/colonoscopy next week and then the capsule test. The GI ordered the chromogranin and gastrin prior to these tests based on my symptoms and family history.

I don't think the 26 seems too high, but don't know what high would be. The 58 is definately higher but hopefully these are low enough to not matter. I have seen on some sites people as high as 3000, but I did not know the "units" they had used, or their normal range.

I hope my GI orders more blood/urine now that the chromogranin is slightly high, did you have other tests done?

Good luck and keep me posted I will when I find out anything.

klisesr
Posts: 15
Joined: Nov 2010

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
Posts: 1
Joined: Jan 2012

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.

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

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
Posts: 1
Joined: Nov 2013

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

northa914
Posts: 89
Joined: Mar 2011

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.  Smile 

 

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