1. < Neuroendocrine Tumors (NETs)
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I had NET removed at porta hepatis: CGA was 3886.

Posted by stevenkos @stevenkos, Jun 6 8:03pm

Dr tells me not to worry to much about Cga. After surgery labs, Cga went down to 518. Now After 4 months Cga up to 1356. I'm due for another DOTATATE PET scan head to mid thigh. The first one before surgery didn't show any uptake. I am concerned about another Net. Anyone else have this reoccurring tumor? Thanks, any comments appreciated.

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Turkey, Volunteer Mentor | @tomrennie | Jun 27 9:49am
In reply to @stevenkos "@tomrennie there is a review board of 6 cancer doctors that also looks at the test..." + (show)
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@tomrennie there is a review board of 6 cancer doctors that also looks at the test results before a final determination is made and my options. So it's a group effort on what is best for me.

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@stevenkos Being a native of Philly, I actually know the U of Penn hospital well. I just flew back to Arizona a few days ago from Philly. I understand your trust and confidence in your care team. To me, that is really important. Having endured NETs for almost four years, I am just more comfortable with a member of the team being a NETs specialist. According the their website, they have a NETs treatment program, so I actually would be surprised if one of the doctors on your team isn't a NETs specialist? Let's hope that the MRI and biopsy come back with favorable results. Please keep us posted on how things go? Knowing the level of talent at U of Penn, I am eager to learn how things progress. How are you feeling overall about everything?

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mcharlesfrancis | @mcharlesfrancis | Jun 28 7:47am

I can understand why you're concerned. Seeing your CgA rise from 518 to 1,356 after surgery would make anyone anxious.

The reassuring part is that your doctor isn't placing too much emphasis on the CgA alone and has ordered another DOTATATE PET scan. Many NET specialists rely more on imaging and the overall clinical picture than on Chromogranin A by itself because CgA can be affected by a number of things besides tumor growth.

The fact that your first DOTATATE PET scan showed no uptake before surgery is also encouraging. Hopefully this next scan will provide a clearer picture of what's going on.

Some NETs do recur after surgery, while others never do. Some patients also have rising CgA levels without clear evidence of recurrent disease. That's why the scan is so important.

Try not to let the number alone convince you that the tumor has returned. Wait to see what the DOTATATE PET scan shows, and then you'll have a much better idea of what, if anything, is happening.

Wishing you the very best and hoping your scan brings reassuring news. Please let us know how it turns out.

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