Brain mets acting up

[StephN]

Well folks, the fight continues. Seems to be the season for concerns with our collective brains!

My brain MRI of last week did turn up some activity. However it is in the same place as the 3cm (1 inch diameter) met that was Gamma Knifed exactly one year ago.
So, the big question is whether the (what could be) regrowth of that tumor which had shrunk down to about 1/3 the original size and has come back up about 1/2 cm is the bedeviling necrosis (or tumor death) OR is actually new tumor activity.
There is also a new spot of 3mm (very tiny) right next to the margin of the original tumor that was not seen in the Sept. MRI.
The brain tumor review board discussed my case on Wed and my rad onc called late yesterday to discuss with me. Naturally the neurosurgeon says lets just go in and take it out and then we will know for sure. The Gamma guys say if it shows positive on another test and we can get the approval we can Gamma Knife it again plus get the new spot.
Then there was the "let's watch it a month and see" opinion. NOT for me.

So, after mulling all this over, I have decided to go with the Brain PET scan recommendation. Because the area is large enough to show activity of tumor nature, although not conclusive. As some here have mentioned in the past, a brain PET may not be of value as it is not as sensitive as in the rest of the body as the brain generally shows more glucose uptake anyway. However, they feel if I do have tumor activity it would show unless it is very slow moving. The 3mm spot most likely will not show well on the PET as too small unless it grows in the meantime. This spot is just outside the high dose area of my procedure last year.

So, I may follow in Barabara's recent footsteps and have to have them go in and excise this mass to have a definitive answer. But, I plan to give them another look first.

Two good things. First, they are not asking me to take any Decadron now (YAY!), as I have no symptoms and there is only a little local inflammation (if that is what the enlargement is) and nothing outside that. Second, the area is in my cerebellum (lower brain) behind my left ear and not a difficult place to operate.

What the neuro onc said about necrosis is that typically it will appear in the time period of 6 up to 18 months after a procedure. I am smack in the middle of that window. One other good thing is that I have been having my CEA tumor marker followed (as well as CA27-29) and this marker was sensitive to the brain tumors last year. My number has been steady at .9 for months (higher than 5 is abnormal) after being as high as 15.4 the week after my Gamma Knife last January.

So, it is hard to know exactly what is going on with the low tumor marker and other factors. As for the idea of taking one of the new small molecule drugs, all my docs say that since I am NED from ears down it is considered a problem of local control and advise to stay with "local therapy."

After all I went through over this last year, I was prepared for this news, although it still freaks out everyone else who hears it so I am not spreading it very far.

One last thing. I am scheduled for the Bayer HER2 Serum Test when I have my Herceptin and blood draw on Tuesday. This may give us one more way to tell about the brain activity.

Thanks to all who have had this "necrosis" problem in the past and posted about it as it has given me the information I need to keep up my courage!