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Any Other BRCA1 Triple Negs?

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CalGal View Drop Down
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    Posted: Jun 04 2007 at 1:45pm
Hello All -

I'm positive for the BRCA1 mutation and a triple neg.   While I'm NOT one for stat's on most things related to bc, in this regard I find it interesting ...

Triple negs are only 20-25% of all bc;
BRCA1 & BRCA2 are 5-10% of all bc;
Among BRCA1's, 75-80% are triple negative.

Any other triple neg BRCA1's on this board?
(Yes, I also post at bco and FORCE).

CalGal

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lazeee3 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lazeee3 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2007 at 3:43pm
Hi!  I just found this forum and I think it is great! Yes, I too am a triple neg and BRCA1 positive. I also have a very strong histroy of BC. My mom died of breast cancer when she was just 33. I was only 3 years old. I was diagnosed at 48. Are there any other similarities between us? I am officially a 1 1/2 year survivor now.
lazeee3
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DEEAUS16 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DEEAUS16 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2007 at 4:28pm
 I am also BRCA1 and triple negative.  I have 2 older sisters with BC one at age 42 and 46.  I was 38 when I was diagnosed last Aug.  I have 3 other sisters.  One has already tested positive for BRCA1.  Waiting on results from the other 2.  We know it came from my mother's side of the family as my dad was negative.  My mom died of esophagus cancer but I do have a cousin on her side that has BC also.  Deanna from WI
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2007 at 5:37am
HiCalGal, thank you for the information.  I didn't realize that triple negs are  20-25% of all bc, I had thought the number smaller.
 
Yes I am triple neg and just recently tested positive for a brca 1 mutation.
I was dx the second time earlier this year both times triple neg so just recently started chemo again.
 
I do recognize you from the bco board, it's nice to see you here,
Pam
 
 
 
 
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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: Jun 05 2007 at 1:32pm
Hi Lazee3, Deanna & Pam -

Looks like most of us have some family history of bc.   My mother and maternal grandmother were dx'd at age 46 & 47; mom being an only daughter and grandma being an only child.  So, no other female relatives on that side (and only one uncle).

My mom dealt with bc off and on for 13 yrs, having two primaries, one in each breast, five years apart.  Bilateral and two primary bc is another risk of BRCA1.  Her last two years, she dealt with mets, before passing at age 59.

In 12/2005, I was dx'd with recurr bc, mets to liver and unrelated kidney cancer.   However, since 6/30/06, I've been NED for bc!  And NED for kidney cancer since mid-March!  Smile

However, my grandma passed away last year at age 93, unrelated to bc, so I hope I take after her!

L - How sad that your mom passed at such a young age, when you were only a toddler. 

D - I hope your sister's who haven't been tested, end up neg for BRCA1.

P - What chemo are you doing now?  How long between bc occurrences?  What name do you post under at the other sites?

All - Do you know your BRCA1 mutation?  Mine is 5385insC.

CalGal
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2007 at 2:17am
Morning Calgal, oh yes very heavy family history here, mom died at 46 from ovca, maternal gmother at 42 bc and lots of others. My oldest daugther dx at 38 bc.  It's really hard to come up w/records since they have all passed away so young.  I was 56 and 60 when I was dx so not as young as the others.
My mutation was 2594delC.
Can you advise where there is good information on learning more about our particular mutations?
My sister who is 49 and never touched by bc sent her testing material in last week and my oldest daughter is having her blood drawn today.  She was dx earlier this year.
 
I'm galnok on the bco board.  I just started Taxotere 100% for 4 cycles but that may change as my regular Onc is out of the office until July 1.  I went for  a little over 4 years before being dx w/a new primary on the other side.  Had a bilateral mastectomy this last April.
 
Pam
 
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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: Jun 23 2007 at 9:20am
Just wanted to bump this up ... 
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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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2007 at 6:19am
My sister recently got her brca results and they were negative, can't remember if I posted that but I was so happy to hear that.
My oldest daughter gets her results next week.  She is pretty confident she is positive since she had two tumors, one estrogen positive and one estrogen neg plus my being brca 1 positive so I'm just hoping she is negative, worries me so.
 
I'm pretty weary this week-end from chemo but hanging in there,
hope you all have a good one,
 
 
 
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Stage 1 2007
BRCA 1+
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lucky View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lucky Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2007 at 8:26pm
Hi everyone!
 
I am just wondering -  is everyone who has breast cancer automatically tested for  brca ??     or  is the test Only done if there is a history of cancer in the family ??  
 
 
Thanks for answering!
 
 


Edited by lucky - Jun 24 2007 at 8:33pm
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2007 at 6:19am
Hi Lucky, Calgal would be a good one to answer this question but I do know not everyone is tested for the brca.  Usually you have to have a family history or a smaller surviving family.
You have to specifically ask to be tested, it is best to see a  genetic counselor and they will help and advise you as to whether you might be a candidate for the testing.
 
Pam
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Stage 1 2007
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lucky View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lucky Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2007 at 3:19pm
Thanks Pam!
 
I was never tested for it.  I guess that's because no one in my family ( even generations back )  had any kind of cancer and I told that to the oncologist.
I guess they also figure with the rare cancer I have -  what else could possibly be going on inside of me.  
 
 
 
 
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PineHouse Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2007 at 7:43pm

More stats.Triple negatives
47% of Black breast cancers are triple negatives
25% of Caucasian breast cancers are triple negatives
17% of Hispanic breast cancers are triple negatives
12% of Asian breast cancers are triple negatives
15-20% of all breast cancers are triple negatives
90% of BRCA1 breast cancers are triple negatives
80% of basal-likes are triple negatives

Breast cancer types
20-30% of breast cancers are HER2/neu +
65% of breast cancers are ER+ and/or PR+
15-20% of breast cancers are ER-/PR-/HER/neu-

Hereditary breast cancers
5-6% of breast cancers are attributed to BRCA
5-10% of breast cancers are attributed to hereditary mutations
50% of hereditary breast cancers are attributed to BRCA

BRCA
0.1-0.6% of US population carries BRCA mutation
80% of women with BRCA mutation develops breast cancer
12% of women develops breast cancer

Basal subtype
15% of breast cancers are basal-like
80-90% of triple negative breast cancers are basal-like
39% of Black premenopausal breast cancers are basal-like
14% of older Black breast cancers are basal-like
16% of Caucasian breast cancers any age are basal-like

Menopausal status
63% of triple negatives are diagnosed <60 years

BRCA data
BRCA1 is in chromosome 17
BRCA2 is in chromosome 13
100's different mutations found in BRCA1
3 different mutations found in 90% of Jewish BRCA1

I gathered these over a few months from various sources.
 
 
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lucky View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lucky Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2007 at 9:07pm
Hi,
 
That's a really good breakdown of triple negatives.   I have a question for anyone who might know the answer.
 
If the cancer is Not hereditary -  then what do they attribute it to ??
 
And -   why is it that triple negative is more common in women under age 60 ?    Is the change in hormones at menopause actually causing an increase in triple negatives ?
All women experience a change in their hormones during menopause.
But what is it about menopause that causes the ER/PR  to be Positive in the majority of breast cancers ?
I thought that all menopausal women develop less estrogen receptors which would actually cause triple negatives to be the majority instead of the minority ??
 
Also -  anyone have any theories as to why there are more triple negatives in black women ??
 
 
 
Originally posted by PineHouse PineHouse wrote:

More stats.Triple negatives
47% of Black breast cancers are triple negatives
25% of Caucasian breast cancers are triple negatives
17% of Hispanic breast cancers are triple negatives
12% of Asian breast cancers are triple negatives
15-20% of all breast cancers are triple negatives
90% of BRCA1 breast cancers are triple negatives
80% of basal-likes are triple negatives

Breast cancer types
20-30% of breast cancers are HER2/neu +
65% of breast cancers are ER+ and/or PR+
15-20% of breast cancers are ER-/PR-/HER/neu-

Hereditary breast cancers
5-6% of breast cancers are attributed to BRCA
5-10% of breast cancers are attributed to hereditary mutations
50% of hereditary breast cancers are attributed to BRCA

BRCA
0.1-0.6% of US population carries BRCA mutation
80% of women with BRCA mutation develops breast cancer
12% of women develops breast cancer

Basal subtype
15% of breast cancers are basal-like
80-90% of triple negative breast cancers are basal-like
39% of Black premenopausal breast cancers are basal-like
14% of older Black breast cancers are basal-like
16% of Caucasian breast cancers any age are basal-like

Menopausal status
63% of triple negatives are diagnosed <60 years

BRCA data
BRCA1 is in chromosome 17
BRCA2 is in chromosome 13
100's different mutations found in BRCA1
3 different mutations found in 90% of Jewish BRCA1

I gathered these over a few months from various sources.
 
 
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2007 at 3:22am
Thanks Pinehouse for the stats, interesting reading and it's nice to see so much info in one place!
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Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nuzzysnana Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2007 at 12:23pm
Hello Cal Gal,
 
This is my first post on this site. I am a "triple" of course. Diagnoed at age 69, two years ago. Iwas neither young nor African American. Stage 1, Grade 3 (we are all usually grade 3) Node negative, 2cm, angiolymphatic invasion present. Just recently identified as carrying the BRCA 2 mutation and my daughter was also. No prior breast cancer in my family, either side. But my mother and one of her sister's died in their 40's (not from cancer) so I suspect my mother, had she lived, would have been in for a rough ride. I have a cluster of pancreatic cancers on my mom's side of the family which prompted my genetic counselor to recommend testing. But even she was surprised by the results.
 
I am presently trying to get Medicare to approve an oophorectomy, which is not an easy task.
 
Good luck to us all on our quest for "equality".
Nuzzysnana
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2007 at 1:30pm
Hi Nuzzysnana, I was just posting to you on the Komen board, welcome and I'm so glad you have joined up, you'll be a good asset for our great group.Smile
 
My best wishes to you for getting Medicare to approve your oop.  I cannot for the life of me understand why they wouldn't pay for that.  Keep fighting, we have to!!  Keep us posted with this.
 
Please don't forget to post in our polls and if you think of a poll you can start one yourself.  We are trying to gather info within our group and in a place where it can be seen easily.  They are interesting to read.
 
 
 
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Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarolinaGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2007 at 2:13pm
Me too - BRCA1+ and triple negative.  No family history of BC.  Also, I don't fall into other stats - not African American and did breastfeed.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2007 at 4:31am
Hi CarolinaGirl and welcome to our community!
So you were BRCA 1 positive, trip neg and no family history?  That is interesting.
 
Hope you'll go vote in our new polls and feel free to jump in our
discussions with whatever is on your mind, questions, vents, information.
 
 
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Stage 1 2007
BRCA 1+
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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 2:15pm
Hi Nuzzysnana & Carolina Girl -

Welcome!

Nuzzy -
Interesting that you're BRCA2, trip neg and dx'd post-menop.   You probably know that approx 80% of BRCA2's are NOT trip neg.   Good for you that your onc was on top of that "cluster of pancreatic cancers" being a risk for BRCA2.  Is your daughter's bc also BRCA2 and trip neg?

Good luck on getting the ooph!  OC is so hard to find early ...

CG - Good that you got the BRCA test despite no family history ... I'm guessing that you were dx'd pre-menop and that was the reason you got the test?

Pinehouse - Interesting compilation!   I had not seen the ethnic breakdown of trip neg beyond black and white ...  I have tons of bc files ... guess I should take some notes from them!  :) 

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 cats_purr Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2007 at 1:52pm
Hello,
I have BRCA-1 and had triple-negative stage 1 BC.  (Note the use of the past tense!)  I am eastern european Jewish and no doctor ever encouraged testing until AFTER my dx.  Arrgh!

I am trying to get beyond this whole mess (9 months since finishing chemo and 7 months since bilateral mast and BSO).  I can forget about it most of the time, but start reading again and feel the terror starting again.  I am just trying to have faith in God and live every day to the fullest.

How are you doing?  What's your story?


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