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Dec 7, 2007 06:21PM TerryNY wrote:
I have been lurking here for a few days as I'm going through the genetics testing soon.
I'd like to share some thoughts that my dr shared with me and my interpretation of the information.
The statement that BRCA genes are more of a concern in younger women needs more explanation. It isn't the fact that that type of cancer affects only younger women, it's the fact that the younger you are at diagnosis, the odds are higher that you potentially have the BRCA 1 or 2 mutation. We all know BC affects women at all ages, the very young and the very old. However, if you have first degree relatives who were dx in their 20s, 30s and 40s, it's a much higher likelihood that the genetics come into play.
As you age, beyond 50 and over, then the statistical numbers are more the 1 in 8 lifetime chance...this is especially true if family members are getting dx in their 70s and 80s.
I have three relatives with breast cancer, two in their 30s, one in mid 40s and me at 47. My grandmother had it in her late 60s but it wasn't a factor to include in the testing.
Because of our youthful ages (yeah, who would've thought at age 47 I'd be called 'young' ha ha ha....), the genetic test is being suggested for me.
As for the privacy issue, Myriad is the only company in the US that does this testing. You can go to their web site for reassurance on this. It is illegal in the US to be discriminated against for genetic testing results and as of this date, there is no legal documented case of any discrimination occurring. The results are shared with your dr only, not the insurance company. You choose who can see the results.
Also, there is a new component of the testing just initiated this year called BART. I can't remember what the acronym stands for but it's a more 'indepth' test. If you test negative after the comprehensive BRCA 1 or 2, they can conduct the BART using the same blood sample and detect further mutations. They are finding out that some women who've tested negative for the BRCA 1 or 2 are positive after the BART. But this is definitely more than my chemo brain can handle to scientifically explain all the ramifications and methods used.
If your family history concerns you at all, I would definitely talk to your doctor about further testing.
TerryDx 2/13/2007, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR+, HER2-