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julierene · 06-28-2006, 11:26 AM

Just because they know that HER2 status is slim in BRCA genetic mutations, doesn't mean you don't have a genetic mutation. Family history is definetly worth saying you have a genetic issue.

For me, I found out my family had a p53 mutation. 10 years ago, they tested the same gene, and didn't find the mutation. So just because they can't find it now, doesn't mean it isn't there.

My thoughts though, only get tested if you are trying to figure out what children you are having to monitor. The test could drastically cut your bills if you don't have to watch out for your children developing cancer. That's what we did for ours. I didn't even bother getting tested, cause we knew my daughter who developed cancer at age 5, would have my gene. So it was more of a device for my other children to see who was at risk. Just my thoughts...

Also, the whole 5-10% you see for their estimated "genetic breast cancers" I think is totally wrong. We have just scratched the surface of identifying them, so how can they give a % like that? The correct terms would probably be something more like "we have identified only 5-10% of genetic breast cancers with our current technology and understanding of the genetics behind breast cancer".

10 years ago, they told us our p53 gene was normal. What they failed to say was "with our current test, it looks like the p53 gene up to Exon 9 was normal". They failed to tell us there were more Exons to test. But back then, they didn't test past exon 9 because they didn't have a test past 9. They missed our mutation by 1 Exon. It's almost like saying, they flew to the US, landed in our city, drove to our street, knocked on 9 doors, saw a dense wooded lot at the end of the street that they couldn't get through, and decided we didn't exist. Come to find out, they just didn't have the 9th Exon mapped out - or even a test for it at that time. All we knew was that our p53 gene was apparantly OK. We didn't even know about the wooded lot - or even that there was one available to look through. So next time you think about genetics, maybe that will help knowing what I went through.

06-28-2006, 11:26 AM	#27
julierene Senior Member Join Date: Dec 2005 Location: Illinois Posts: 327	Just because they know that HER2 status is slim in BRCA genetic mutations, doesn't mean you don't have a genetic mutation. Family history is definetly worth saying you have a genetic issue. For me, I found out my family had a p53 mutation. 10 years ago, they tested the same gene, and didn't find the mutation. So just because they can't find it now, doesn't mean it isn't there. My thoughts though, only get tested if you are trying to figure out what children you are having to monitor. The test could drastically cut your bills if you don't have to watch out for your children developing cancer. That's what we did for ours. I didn't even bother getting tested, cause we knew my daughter who developed cancer at age 5, would have my gene. So it was more of a device for my other children to see who was at risk. Just my thoughts... Also, the whole 5-10% you see for their estimated "genetic breast cancers" I think is totally wrong. We have just scratched the surface of identifying them, so how can they give a % like that? The correct terms would probably be something more like "we have identified only 5-10% of genetic breast cancers with our current technology and understanding of the genetics behind breast cancer". 10 years ago, they told us our p53 gene was normal. What they failed to say was "with our current test, it looks like the p53 gene up to Exon 9 was normal". They failed to tell us there were more Exons to test. But back then, they didn't test past exon 9 because they didn't have a test past 9. They missed our mutation by 1 Exon. It's almost like saying, they flew to the US, landed in our city, drove to our street, knocked on 9 doors, saw a dense wooded lot at the end of the street that they couldn't get through, and decided we didn't exist. Come to find out, they just didn't have the 9th Exon mapped out - or even a test for it at that time. All we knew was that our p53 gene was apparantly OK. We didn't even know about the wooded lot - or even that there was one available to look through. So next time you think about genetics, maybe that will help knowing what I went through. Last edited by julierene; 06-28-2006 at 11:39 AM..