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Elevated Chromogranin A, brand new diagnosis

Sgdcsn
Posts: 1
Joined: Apr 2019

Input requested.  My spouse had a recent colonoscopy and biopsy results came back, "neuroendocrine cancer. "

After Chromogranin A level came back 195, his (new) Oncologist repeated lab and it came back LOW.  Today, Oncologists repeated blood work.

Husband has family history of prostate cancer (father) and pancreatic cancer (paternal grandmother).

Oncologist said that his cancer is colorectal and that he should be seen by a urologist if he wants to "include" prostate.

Does Chromogranin A ONLY test for certain areas in the body (for cancer)?

Should he have a whole body PET SCAN?

I'm so confused!

Any help is greatly appreciated!!!

Annabelle41415's picture
Annabelle41415
Posts: 6210
Joined: Feb 2009

I'm not aware of that test but usually a common marker for colorectal cancer is a CEA test.  That test could be for pancreatic cancer testing.  CEA levels are monitored for most people going through colorectal cancer patients but sometimes cannot be very accurate, like me.  Mine was always normal so testing the CEA for me during diagnosis and treatment was not accurate.  A scan is probably the best next step to see if any suspicious areas of concern are found.  I'm sorry that you had to find this group but you are in great company here with a lot of people who have a lot of knowledge.  Wishing your husband the best.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've never heard of that test, sorry.  All I know is that if he has colorectal cancer, prostrate is something else entirely. Colon cancer can spread but it usually only spreads to the lungs and/or liver. It does spread to toher places occasionally. But I wouldn't assume that if he has colon cancer he'd also have prostrate cancer.

Jan

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Neuroendocrine cancer is not a common form of colorectal cancer, like under 2% of CRC patients, and has some different biology.    The chromogranin marker is often used for advanced prostate cancer, but classic tumor markers are not really unique to a location either.   Your oncologist doesn't sound very inspired or insightful or open minded but you do need to get on the stick and get a good, above average plan(s).  Some  versions of neuroendocrine cancers are very serious.  Usually they will do a CT and/or MRI scan(s) first, perhaps a very specialized MRI scan call mpMRI.

Whether it is prostate cancer and/or CRC, I would do several things.  

1. get a much better blood test, with more panels and markers, right now.  There is extra information in extra data.  As a minimum, I'd ask for a CBC with differentials, Chem25, PSA, free PSA,  and more CRC related markers that are not "standard", like AFP, CA199, CA125 and CA72-4.

Because the doctors get all wrapped up in insurance and "standrard medicine" issues, it seems important to order extra tests ourselves.  National phone lines include Quest, LabCorp, and Life Extension Foundation.  Sometimes survival is getting things done yourself.

2. line up 2nd and 3rd opinions right now, preferably one of the top cancer centers, even MSK or MD Anderson.  You're likely to get different opinions, I treat them as partial information.  When things are tough, we've been know to get 6 opinions on one treatment modality or direction, and still choose a less common path, to survive well.

3. We use free calls too.  Two labs I'd try would be the Nagourney Cancer Institute (formerly Rational Therapeutics, a live tissue test lab) at 1-800-542-4357,  and  Weisenthal Cancer Group (www.weisenthalcancer.com). If you have money or good insurance, especially if it is aggressive and  if you can get large enough living surgical samples, I would consider these living tissue tests labs for diect chemo testing.  The live samples need fast shipping and handling after biopsy (surgery). 

4. If you have money or great insurance, I would consider either a liquid biopsy  right now and/or a tissue biopsy from surgery. Foundation One is popular on some forums, Caris used to be popular here. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Wow, I'm glad you know so much! Very helpful for our new member!

Jan

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