Late onset brain metastasis – diagnosis, treatment prognosis

Hi

im afraid I can’t offer much advice on brain meta but I can say that if it is Mel then treatment is vastly different now to 21 years ago.  Immunotherapy has changed the game considerably and chances are greatly improved

That's exactly where we are right now.  My husband's first melanoma (Stage 1b) was removed in 2002.  His second, an in-situ, was removed in 2012.  Now a brain MRI (for an eye issue)  is showing multiple small lesions along the nerve pathways.  We are going for a second MRI in October (to make sure that the lesions were not simply artifacts), and if there has been no change the next step will be a spinal tap.  We've heard everything from "oh that's nothing" (ordering doctor)  to "melanoma wouldn't have come back twelve years later"  (oncologist) to "we have to look further because this could be very serious" (neurologist).  

The waiting and not knowing is overwhelming.  I'm so sorry that you and your wife are facing this, and I hope that the spot turns out to be nothing.  Hang in there!

Unfortunately, it can come back very late. On a more positive note, treatments have changed greatly, as have the limitation lines previously set on "older" treatments (stereotactic radiation). Until docs know with some certainty WHAT this spot is, (assuming they've already done a second MRI and determined it is not image artifact, but indeed a spot within the brain stem) there is no real way of knowing the "best" treatment choice. Spinal tap sounds like a reasonable mode of finding if there are melanoma cells in the central nervous system fluids. I'm not sure about PET scan for the head, as the brain is tricky and lights up pretty much everywhere… but it would be a good idea to check the rest of the body for potential metastasis, should that brain spot actually be something ominous. From what I've read, lesions in the brain stem can be treated with gamma knife or SRS. It's an outpatient procedure, very targeted therapy, and generally super successful with melanoma metastasis to the brain. I'm thinking a neurosurgeon would shy away from such a small spot, and likely anything in such a delicate region of the brain. IF it is something to be concerned with, locate a really good radiation oncologist… skilled/experienced gamma teams are worth their weight in gold. Additionally, immunotherapy. Yervoy/Nivo (ipi/Opdivo) is the most common "go to" for stage IV these days. Single agent Keytruda is also an option. BRAF mutation testing would be another thing to ask about. That could open the door to additional targeted drug options, which have been shown to work in the brain. Prognosis would still be good… even if it does turn out to be melanoma metastasis. Just over 5 years ago, my odds of survival were a dismal 5-7%. Yet here I sit… typing away before going out for a morning run. Melanoma research and development has come a loooong way in a short time!