I could really use some input

[SunDiego]

DeenaH, I wish I could tell you that a score of 0 on the CTC means NED, however I do not believe this to be true. My wife has had two CTC tests done, both of which have come back at 0, however she has a single metastasis on the liver that has been biopsied to be confirmed a met. It still lights up on the PET/CT. And her tumor markers are still elevated. Basically, she is NOT NED, but her CTC score has been 0.

I'm no doctor, but this is pretty clear evidence that cancer can spread without being evident in the blood. Your husband's friend seems to have given irresponsible advice.

Try the Serum Her2 test as well, if you have not already done that. It is a circulating Her2 test.