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Rolepaul · 08-12-2012, 10:50 AM

I agree with Lani for the most part. We need a good tumor marker test and the ones that exist are not quite there. I disagree with Lani on the fact that testing too many for Brain/spine nerve involvement is not helping. To say that 1 or 2 out of a hundred will be all that is found is something I disagree with, but I am in the minority. Until additional studies state how often BC Her+ patients get CNS mets, and there is a study to note how many deaths occur from this outcome, nobody can say who is right. I talk to some of the leading researchers and CNS involvement is likely 30% of the time for mets. And mets are very low in the first two years if Herceptin and chemo are used initially. Five to eight years out, the studies are just coming in and the data being analyzed. Until this data shows very few women getting CNS involvement, I will state my opinion that if you have three or more positive nodes are they are HER+, you need to look at brain MRI scans at years 2, 4, and 6. This reduces the patient level to something that is supportable with the current system. The next question is what is the tumor size where SRS is going to be effective, what other treatments work. The difference is that my patient of one (Nina my wife) missed the odds on not getting any mets, missed the odds on successful SRS and oral chem, and is beating the odds on spine involvement. Lani is right that the odds favor no involvement, but I bought flood insurance for a home that had not see high water for 45 years. The consequences of not getting a CNS diagnosis early are too severe to ignore.

08-12-2012, 10:50 AM	#15
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Question? I agree with Lani for the most part. We need a good tumor marker test and the ones that exist are not quite there. I disagree with Lani on the fact that testing too many for Brain/spine nerve involvement is not helping. To say that 1 or 2 out of a hundred will be all that is found is something I disagree with, but I am in the minority. Until additional studies state how often BC Her+ patients get CNS mets, and there is a study to note how many deaths occur from this outcome, nobody can say who is right. I talk to some of the leading researchers and CNS involvement is likely 30% of the time for mets. And mets are very low in the first two years if Herceptin and chemo are used initially. Five to eight years out, the studies are just coming in and the data being analyzed. Until this data shows very few women getting CNS involvement, I will state my opinion that if you have three or more positive nodes are they are HER+, you need to look at brain MRI scans at years 2, 4, and 6. This reduces the patient level to something that is supportable with the current system. The next question is what is the tumor size where SRS is going to be effective, what other treatments work. The difference is that my patient of one (Nina my wife) missed the odds on not getting any mets, missed the odds on successful SRS and oral chem, and is beating the odds on spine involvement. Lani is right that the odds favor no involvement, but I bought flood insurance for a home that had not see high water for 45 years. The consequences of not getting a CNS diagnosis early are too severe to ignore.