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defeatbc
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Topic: BRCA & family history Posted: May 31 2008 at 4:37pm |
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I tested negative for BRCA (both 1 & 2) despite having a first degree relative with breast cancer. My mother is a 12 year disease-free survivor. It is still possible that an unidentified gene may be a factor in my family. It is also possible that my mother and I are just flukes.
So, I'm curious to see what the demographics are at this site. Please input your info. Thanks.
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Dx 3/08 at 31 yrs.
Stage 2, Grade 3, 1/13 Nodes, Bi-Mast
adjuvant Taxotere & Carboplatin
BRCA1- and BRCA2-
Determined to grow old with my spouse and see my toddler son grow up!
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
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Points: 8549
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Posted: Jun 01 2008 at 2:41am |
This whole thing is odd. My mother, grandmother, aunts. practially everyone has died young from ovarian or bc. Myself and my two daughters have a brca 1 mutation, my only sister tested neg.
My grandma and mother died a long time so it's hard to get ahold of any paperwork.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Possum
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Joined: May 28 2008
Location: Australia
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Points: 26
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Posted: Jun 18 2008 at 10:57pm |
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I have just got my BRCA test results and I've been told that I have several mutations that are not thought to be pathogenic and one (BRCA1) that they are not sure about (mutation of unknown significance). So I'm pribably BRCA neg but they can't be sure! Not all that helpful really. Is any one else in that situation?
Possum
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TN G3 Stage1,dx 22/02/08
SN bx (3 neg nodes)
Tx FEC100(3cycles),Taxotere(3cycles)
BRCA1 Unclassified Variant
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
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Points: 8549
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Posted: Jun 19 2008 at 8:34am |
Well good grief Possum, how do you sort that out??
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Stage 2 2003
Stage 1 2007
BRCA 1+
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CarynRose
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Joined: Aug 04 2007
Location: Robbinsville, NJ, USA
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Points: 960
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Posted: Jun 19 2008 at 1:16pm |
Possum,
Have you met with a certified genetics counselor? The counselor should be able to let you know if you are positive or negative. I will tell you that I heard the lectures of several experts last month and what the 'unknown significance' tends to mean is that you ARE BRCA positive, but that they haven't yet identified the exact meaning of your particular mutation.
In my unprofessional opinion (given that you are also Triple Neg), you should proceed as if you ARE BRCA positive and maintain a higher level of surveillance.
Cheers,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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lady4law
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Joined: Jul 12 2007
Location: United States
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Points: 274
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Posted: Aug 09 2009 at 3:57pm |
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I tested positive for BRCA 2, but the actual report said something about an "unknown significance". It states there are only 12 other cases of this particular BRAC mutation, and they are all located in a small Austrian Jewish group (4 families), a Venetian (I think 6-7) and one or 2 others. My maternal grandmother was from Venice. BINGO. My mom died of BC.
The thing I am concerned with is my paternal grandmother also died of BC. I wonder if she had the gene. My dad said she died very young, late 20's or early 30's. He really had little memory of her, so I am thinking she had to have died in her late 20's.
I had a 1/2 brother, dad's son, who has since past away. I am wondering if I should tell his sons and daughter's that I tested positive as I guess perhaps dad's mom might have been the "carrier". I just assumed it was my mom's mom due to the location of the 12 families. (I have no information regarding where dad's mom's family came from, but thought it was the British Isles.
Jean
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IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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trip2
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Posted: Aug 15 2009 at 11:18am |
Jean,
Other than our Steve who is so knowledgeable about this sort of thing I don't know that someone here can help you but I hope so!
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Stage 2 2003
Stage 1 2007
BRCA 1+
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lady4law
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Joined: Jul 12 2007
Location: United States
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Points: 274
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Posted: Aug 15 2009 at 4:43pm |
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Pam My Onc and the lab say I have BRAC 2 gene. I assume it is from my maternal grandmother, as she was born in Venice, Veneto (formerly Italy) as that's is one of the three places this particular gene is from.
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IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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Roxie
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Posted: Aug 27 2009 at 9:20pm |
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You are not a professional, and you should not be giving advice like you are a professional/doctor. Why is that just because everyone here has breast cancer and is triple negative they think they know everything there is to know? You can easily frighten people. It is a shame. I will not be back, I can't deal with the people here that think they know it all and are experts. Shame on you!
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lady4law
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Joined: Jul 12 2007
Location: United States
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Points: 274
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Posted: Aug 28 2009 at 12:07pm |
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Who is this Roxie talking about? Anybody got a clue?
I am sure there are many "professionals" here, maybe even some Drs and nurses. But the one that know the most about BRAC are the researchers.
Jean
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IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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cg---
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Posted: Aug 28 2009 at 2:11pm |
Dear Jean,
I have no idea who she is talking at...she is just making disparaging remarks.
I told her that she cannot assume that the person responding is not a doctor because I know for fact that we have doctors, nurses, lawyers, people with a PhD in various disciplines, researchers, and many other representatives from the medical community that reply to our questions.
Connie
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lady4law
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Posted: Aug 28 2009 at 4:37pm |
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There sure are Connie.
I am one!
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IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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cg---
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Joined: Jul 20 2007
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Posted: Aug 28 2009 at 5:48pm |
Well, that disproves the theory we give false information!
The great equalizer TNBC.
Thank you for supporting my facts and declaring your professional self.
Love,
Connie
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