HIgh Chromogranin A of 5727 ng/ml!

Microbe1943

Has anyone heard of such a high CGA? I am being worked up for a carcinoid or NET. I take PPI's and hav chronic renal insufficiency which I read will make the test higher...but could it make it 5600 higher? Normal for this lab is <130. Hope someone else has had this level and has some info to share. Thank you

peet

I have experience having elevated CGA not in that range however. Have they done more diagnostics?

Fairchild

I just found out that my CgA level is 4,050.

peet

Oh wow. Did they work you up for NET’s?

Microbe1943

Microbe1943 User:

I wrote in Jan about such a high Chromogranin A of 5757. Had a PEt dototate NETs and none found. Dr. just moved on from once this scan was negative. Still wonder could it have been so high just from PPIs and renal insufficiency?

Microbe1943

https://csn.cancer.org/discussion/comment/1696783#Comment_1696783

https://csn.cancer.org/discussion/comment/1696783#Comment_1696783

Microbe1943

https://csn.cancer.org/discussion/comment/1696786#Comment_1696786

I wonder what your doctors have said about this high CGA level? Let us know when you find out if you can.

Fairchild

https://csn.cancer.org/discussion/comment/1696784#Comment_1696784

Well, I'm getting worked up for something, I'm not sure what. Years ago a small adrenal tumor was accidentally found. I'd already had bone cancer, so I reported it to my oncologist. At first he did a bunch of testing and said I had carcenoid, but then he changed his mind and told me it was an unimportant pheo and not to worry about it. That was about 10 years ago. About 4 yrs ago I was diagnosed with breast cancer and am still in treatment. My nephew was just diagnosed with a pheo, and my brother, who's a doctor, has NF1. When he learned that I had been diagnosed with a pheo, too, he said I should tell me current oncologist. The result? A TON of new tests. So far, the CgA is really high, and gastrin is high, too. I have a CT, genetic workup, and PET scan next month. Does this all make sense? What are the odds that the CgA is just a false positive, b/c I'm taking proton-pump inhibitors?

Fairchild

https://csn.cancer.org/discussion/comment/1696785#Comment_1696785

I just don't know.

peet

I don’t know about false positives but that seems crazy high. My CGA was low most of my NET treatment. It is now in the 30’s. PET is how they found my Neuroendocrine Cancer. Then with a whole bunch of parts removed they mitigated it so far. It sounds like you have had a wild ride. I was at MGH in Boston.

Fairchild

https://csn.cancer.org/discussion/comment/1696792#Comment_1696792

https://csn.cancer.org/discussion/comment/1696792#Comment_1696792

https://csn.cancer.org/discussion/comment/1696785#Comment_1696785

Yeah, this is really pretty frightening to me. After all, I'm just now getting my feet under me after treatment for breast cancer. I actually haven't even talked with my oncologist about the CgA results yet. I was in last week to see him and he ordered all of these tests. I'm trying to stay calm and not bug him but I'm not scheduled to go back to see him until last June.... and I'm not sure I can last that long. PEET, did you have any trouble getting a PET? My insurance won't approve it until after I have the CT first. And the wait is killing me.

It's really hard to imagine that I could have a THIRD form of cancer! But I don't like the genetic link in my family with my brother's NF1 and his son's pheo. I'm trying to prepare myself for the diagnosis by learning as much as I can. Are there any websites y'all would recommend?

Fairchild

https://csn.cancer.org/discussion/comment/1696792#Comment_1696792

I was just reading your history. That's some kind of MAJOR surgery to get through! Kudos to you for sheer will to survive!