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Calgal-BRCA Neg Question

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trip2 View Drop Down
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    Posted: Jul 06 2007 at 2:43am
Morning Calgal, I have a question for you since I know you are right on top of things with the brca and testing.
 
Yesterday my 20 yr old daughter went to see a counselor in Tulsa, they do genetic counseling at a large hospital as a community service so there was no fee.  I had spoke w/the counselor on the phone, sounded very nice and educated on the whole matter.
 
Then I talked to my daughter while she was driving home and she told me the counselor had said if it comes back negative then she would not be high risk and be the same as the general population!
 
Here's my problem with this.  We have a extremely heavy family history for br and ovca, myself and oldest daughter tested positive.  Even if my youngest tests negative I had thought she would still be high risk because of heavy family history????  This was one of the qualifications
for the now accepted mri for breast cancer screening so this doesn't make sense to me.
 
I tried to tell my daughter that she was still a higher risk than the general population and she wouldn't hear it.  I guess she has latched onto what
this counselor said for her own peace of mind and that scares me.
 
What do you think?  Am I wrong?
 
Thanks,
 


Edited by trip2 - Jul 06 2007 at 2:45am
Stage 2 2003
Stage 1 2007
BRCA 1+
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CalGal View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CalGal Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2007 at 2:36pm
Hi Trip2 -

Just got back from a Northen Cal weekend (w/o the laptop) ... and am getting caught up on the many posts here!  

From everything I've read, your concerns about what your daughter was told by a genetic counselor (?!) are right!

Even if her BRCA tests come back negative, you are correct, that due to your family history of bc and oc, she is at a HIGHER RISK THAN THE GENERAL POPULATION!  

They've only found the two mutations, BRCA1 and BRCA2, which are mutations on the 17th and 13th chromosomes, so far .... but they (the researchers) really believe that they will find additional mutations in the future. 

Hopefully, your daughter tests negative and will still be vigilent with SBE's and pushing for breast MRI's rather than just mamm's in the future.

Just like anything, the quality, knowledge and way of conveying information really varies ...

I'm sorry I forget exactly where you're located ... You might try another genetic testing center or counselor ..,

In terms of a genetic risk program for bc and oc, I was most impressed with Cedars-Sinai Medical Center's GenRisk program (Gilda Radner packet) in Los Angeles ... Also, I went to the FORCE conference in Florida in May and among other things, decided to participate (by giving my blood and completing a questionnaire) in the University of South Florida's Family Cancer Genetics Network (FCGN).   Their website is www.fcgn.org.  I will start a new post about it, since it may be of interest.  

On the front page of the FCGN Spring 2007 newsletter, Family Connections, there is an article that will be of interest to you re:  your daughter.   It is titled, "BART Panel:  More Info for Families that Previously Tested BRCA Negative" by Sue Friedman, who is the executive director of FORCE (Facing Our Risk of Cancer Empowered).   For more info on FORCE, go to www.facingourrisk.org

CalGal
BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2007 at 2:51am
Oh Calgal thank you for writing, now I know I'm not crazy!
I am going to check out the website info you gave, I do go into
Force sometimes to read but am not a member.
My youngest doesn't want to hear this from me, I'm mom I guess but hopefully her doc's will pick up on her history and watch her closer.
She says she is vigilant so that is a plus.
Thanks again,
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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