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Topic: BRCA questions. Mom is neg. what does that mean to me?

Forum: BRCA1 or BRCA2 Positive — Connect with others who have either a BRAC1 or BRAC2 breast cancer gene abnormality

Posted on: Mar 10, 2012 03:10PM

shabby6485 wrote:

Hi everyone,

My mom bc young and thankfully is still here today~

I was just diagnosed with LCIS and am heavily leaning toward pmx.

My mom test NEG for the brca gene.

My dads sister was (70 years old) was just diagnosed with bc.

Since I have not been tested yet, I supposed I could still have inherited the gene from  my fathers side?

I am more concerned about my daughter.  For me, it is a done deal with the LCIS. 

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Posts 1 - 17 (17 total)

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Mar 10, 2012 03:35PM carol57 wrote:

Shabby,

My mom, her sisters, their mother and grandmother had BC. Mom is the only one who survived and is now 82. She refuses to have the test for reasons no one can decipher, so I was tested after my LCIS finding, because I wanted the information to help me decide if I would have oopherectomy, too. My pbmx decision was an easy one with the family history, and I knew I would go forward with that whether BRCA was positive or not.

I learned from the genetic counseling that we have a 50% chance of inheriting the mutation from a parent that has it. So  IF your paternal grandmother or grandfather had it, then your dad had a 50% chance of inheriting it, and IF your dad did indeed inherit it, you have a 50% chance of inheriting it from him.

I am BRCA negative, and there's no BC history on my father's side, so my own son, daughter and granddaughter are in the clear, because their fathers have no BC family history.

My mother's refusal to have the test is causing a stir in family, because I have a brother and his children wonder about themselves and their own children. 

If you are positive, your ovarian cancer odds are increased, so you might consider the test yourself even though your LCIS is already nudging you toward pmx.  My insurance covered the test on the merits of my family history. 

Here's what the Memorial Sloan Kettering Cancer Center site says about the chances of inheriting a BRCA mutation:

What are the chances of inheriting an altered BRCA1 or BRCA2 gene?
Both men and women can pass down a BRCA mutation. All people, whether they have cancer or not, have two copies of both BRCA genes - one copy from each parent. If you have a parent with a BRCA1 or BRCA2 mutation, you may inherit that parent's mutated (nonworking) BRCA gene, or you may inherit the working BRCA gene. In other words, you have a 50 percent chance of inheriting either copy of each parent's two BRCA genes. If you inherit a nonworking BRCA gene, you will have an increased risk for cancer. Even though you may inherit a working BRCA copy from the other parent, it takes only one altered BRCAgene to increase risk for breast or ovarian cancer. You also have a 50 percent chance of not inheriting a nonworking BRCA gene from a parent who carries a mutation. If that is the case you have the same risk for cancer as a person in the general population.

Here's the source for that paragraph:

 http://www.mskcc.org/cancer-care/hereditary-genetics/breast-ovarian-brca1-brca2#toc-item-3

Good luck with this--

Carol 

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Mar 10, 2012 04:06PM rachelvk wrote:

Shabby - You could definitely have gotten it from your father's side, and testing would be good for both you and your daughter. The problem you may run into is insurance coverage, if cost is an issue.

I only got it covered because at 42, I was considered 'young.' Having a maternal aunt who had BC and a paternal great aunt who died of BC would NOT have been considered enough of a risk factor - go figure. Worse, even though my sister and I have both tested positive for brca (thank goodness she does not have bc yet but got tested when I was dx'd), both my parents were denied coverage for the test! They were hoping to figure out which side of the family should be forewarned. It is very good of you to think of your daughter, and for the risk of ovarian cancer. Good luck with your decisions.

BMX 10/26/11; TACx6 12/13, 1/5, 1/26, 2/16, 3/8, 3/29; Keep focused on the light at the end of the tunnel.... it's where you get your health back and your life.

Dx 8/16/2011, IDC, 3cm, Stage IIa, Grade 3, 0/7 nodes, ER-/PR-, HER2-Surgery 10/26/2011 Mastectomy (Both)Chemotherapy 12/13/2011 Adriamycin, Cytoxan, TaxotereSurgery 06/07/2012 Reconstruction: Breast implants (permanent) (Both)
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Mar 10, 2012 04:24PM Moderators wrote:

Hi Shabby,

The main Breastcancer.org site has extensive information on Genetic Testing, including who in the family should get tested, what to do if results are positive and what to do if they are negative, and much, much more.

Hope this helps!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...

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Mar 10, 2012 04:30PM shabby6485 wrote:

Thanks for the info.. so, If I test negative, my daughter could still be positive from my husband's side?

I am so afraid that she'll have to contend with this s---- someday!

Thanks again! 

Dx 3/2012, LCISSurgery 08/14/2012 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)
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Mar 10, 2012 09:40PM LISAMG wrote:

Hi Shabby! Without any other family history of BC or OVCA on your father's side, it seems unlikely there is a hereditary component since your aunt was much older at the time of diagnosis. Any other cancers on your Dad's side?  Not sure why your daughter would need testing for your husband's side, unless his family has a significant family history. You are un-informative negative since your mom does not have a " known mutation", and yet a significant family history with possible un-identified gene origins. Been there, done that myself with a significant family hx. on both sides.  Not a fun place to be, in murky waters. Like you, I worry very much about my daughter too. I've done all I can to make her informed and proactive, but somehow it doesn't seem enough....

High Risk for HBOC, BRCA Un-informative Negative Previvor, Bilateral Nipple Sparing Risk Reducing Mastectomy, August, 2010, Lipo/ Micro fat grafting with high profile implants, Nov.,2010. Risk Reducing Lap. BSO, October, 2011.

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Mar 11, 2012 01:13PM shabby6485 wrote:

Hey Lisa!

This is confusing.  So since my mom (who had bc in her 30s) has tested brca neg that doesn't mean i am brca neg.  correct?  I would have to be tested.  If I test negative, would that mean that my daughter is neg or would she have to be tested at some point?

no other known cancers on my dad's side.  my husband's grandmother died of cancer but not sure what type and she was in her 70's or 80's.

I was hoping that since my mom is negative, we would be too.  i am so concerned about my daughter.

Dx 3/2012, LCISSurgery 08/14/2012 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)
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Mar 11, 2012 01:41PM IllinoisNative wrote:

Well, both my parents are negative and I'm positive.  They actually did a DNA test on my dad thinking he wasn't my father...he is.  I'm first generation...which is very rare.  I really wonder how rare it is considering everyone who is not tested.

BRCA 2 Positive

Dx 11/27/2010, IDC, 4cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Mar 11, 2012 01:54PM carol57 wrote:

IllinoisNative, That is a new on for me!  Very good point about the number of people who are not tested. 

Shabby, if your mom is negative and your dad has no family BC or ovarian history, then your daughter would derive any significant brca risk from her father's side. If there's no evidence of bc/ovarian in his family, then the odds would seem remote that your daughter is brca positive. Having said that, IllinoisNative's experience goes to show us that just when you think you have this figured out...you don't. Shabby, have you chatted with a genetics counselor?  That would help you sort thorugh the risks and evaluate whether your daughter would benefit from any testing.

Carol 

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Mar 11, 2012 02:50PM LISAMG wrote:

Shabby, since your Mom was affected by BC & she tested negative, yes this means you are negative for a mutation as well. I do not forsee any current reasons for your daughter to be tested. There are lots of BRCA negative familes out there with a significant family history. I am a prime example There are also other genes that have been identified, such as CHEK2 and RAD51C that contribute to hereditary breast syndromes, but its not known to what extent the roles are of these genes. I think we'll hear so much more about them in the near future too. As Carol mentions, genetic counseling is an option. Did your mother have "full sequencing" re-arrangement testing done and/or BART testing? This would be important to know and could have further implications. Take a look at this study below:

Breast cancer risks in women with a family history of breast or ovarian cancer who have tested negative for a BRCA1 or BRCA2 mutation.

http://www.ncbi.nlm.nih.gov/pubmed/19088722

High Risk for HBOC, BRCA Un-informative Negative Previvor, Bilateral Nipple Sparing Risk Reducing Mastectomy, August, 2010, Lipo/ Micro fat grafting with high profile implants, Nov.,2010. Risk Reducing Lap. BSO, October, 2011.

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Mar 11, 2012 03:35PM, edited Mar 11, 2012 03:36PM by shabby6485

Thanks you everyone!

 Lisa, I will ask my Mom for tht info.  She just got tested last year.  I was wondering if BRCA testing for myself would be necessary before my pmx.  

The other issue I have is that my mother has no medical records from her bc days. She moved many times and could never find them.  She had a double subcutaneous mx done in the mid 70's ( and her doctor died many years ago.  She has vague memories of what exactly her diagnosis was.  My husband thinks she had atypia and that her surgeon was aggressive. That fact that she never had chemo and is still here some 30 years later made him question her diagnosis. This of course, made my risk questionable until the LCIS come along. Last year after my 6th biopsy, she decided to do the brca test for me.

never easy is it!!! :) 

Dx 3/2012, LCISSurgery 08/14/2012 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)
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Mar 11, 2012 07:52PM sjkoffee wrote:

Hey Shabby,

 My dad is a BRCA1 carrier....he got tested because my paternal aunt and paternal grandmother had breast and ovarian cancer respectively.  He got the test so that if it was positive I would have that knowledge and decide what I wanted to do with that information.  I got tested in 2011 when I was 31 years old and was also BRCA1 positive.  My mom never got tested because there is no history of cancer in her family.  However, I had a 50% chance of having the mutation because my dad was positive.  In November 2011, I had a prophylactic nipple sparing mastectomy with TE's.  I am scheduled to have my exchange surgery this Wednesday March 14th!  I truly believe knowledge is power and I am so grateful that my dad had my health and well-being in mind when he decided to get tested.   

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Mar 14, 2012 09:35PM shabby6485 wrote:

hi lisa!

Just got my mom's record.  she had full sequencing rearrangment.  How is that different than BART?

thanks,

Michelle 

Dx 3/2012, LCISSurgery 08/14/2012 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)
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Mar 14, 2012 11:21PM LISAMG wrote:

 http://www.myriad.com/lib/brac/BART%20one%20sheet.pdf

The BRACAnalysis Large Rearrangement Test (BART) was launched to provide a way to detect additional large genomic rearrangements in both BRCA1 and BRCA2.

Although each patient must be evaluated individually based on his or her personal and family history, there is, on average, a less than 1% chance that BART will identify a mutation in a patient who has already had a negative result from Comprehensive BRACAnalysis.

High Risk for HBOC, BRCA Un-informative Negative Previvor, Bilateral Nipple Sparing Risk Reducing Mastectomy, August, 2010, Lipo/ Micro fat grafting with high profile implants, Nov.,2010. Risk Reducing Lap. BSO, October, 2011.

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May 2, 2012 03:39AM Esmerelda wrote:

Hi all, I'm new to this topic and so appreciate everyone's responses to what to me is a very confusing issue! I was just diagnosed last month with IDC and I'm 38 years old. My mom was diagnosed with bc at 59, my aunt (her sister) at 66, and my grandma (their mother) at 88 years old. My mom tested negative for BRACA1/2 and I'm not sure if she took the BART test.

I feel like an anomally. My father's side has no history of cancer, but through my mother's side we clearly have some sort of "familial syndrome" - but not BRACA? I'm wondering what you all think of me being tested - is it possible that I could be the first person to "get" the mutation in my family?

I'm also faced with tough decisions about surgery. I'm debating between a UMX or BMX. Because of my young age and strong family history... I think a BMX is not out of the question. This might sound strange, but I sometimes wish I was BRACA pos so that my decision could be made (sort of) for me! Any knowledge or perspective you might share on my situation would be SO appreciated. Thank you so, so much!!

Jen

Dx 3/29/2012, IDC, 2cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-Surgery 05/30/2012 Mastectomy (Right); Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Hormonal Therapy 07/09/2012 Tamoxifen
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May 4, 2012 12:04AM, edited May 4, 2012 12:06AM by LISAMG

BRCA un-informative negative here & almost 2 yrs. out from my risk reducing NSM's. With a significant family history, dense breasts, and multiple biopsies, I jumped off the surveillance highway for a better quality of life.  My results are amazing, NO regrets, no complications and fabulous care. PM me anytime if u have questions Esmerelda. I feel as though i have lost nothing, but my risks.

High Risk for HBOC, BRCA Un-informative Negative Previvor, Bilateral Nipple Sparing Risk Reducing Mastectomy, August, 2010, Lipo/ Micro fat grafting with high profile implants, Nov.,2010. Risk Reducing Lap. BSO, October, 2011.

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May 29, 2012 06:52PM, edited May 29, 2012 06:53PM by BRCAmomof2

My father was an assumed BRCA1 carrier, not sure where the idea that the gene could only come from maternal side????

My half sister (father's daughter) half-niece (half brother's daughter) and I all carry the same mutation. My father is deceased from pancreatic cancer (also linked to BRCA) and his mother passed away from presumed ovarian cancer in her early 40'

Esmerelda, the testing COULD help you determine wether you want to proceed with a UMX versus BMX as those with the gene are very likely to get another primary in the contralateral breast.

BRCA1 mutation diagnosed 11/11. PBMX 2/16/12 with fat grafting. AFT 5/24/12 and 8/16/12. "When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else." Iyanla Vanzant

Surgery 02/16/2012 Prophylactic Mastectomy (Both)
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Jun 7, 2012 11:18AM kebab wrote:

"Shabby, since your Mom was affected by BC & she tested negative, yes this means you are negative for a mutation as well."

 
I'm not sure if I'm not reading this correctly, or if I just disagree.  The only history of bc in previous generations on either side was my maternal grandmother.  I got tested because both my sister and I had bc, and I was the younger sibling.  I'm BRCA2 pos.  My sister passed away before she could be tested. My other sister and my mom both tested negative.  ...so, just because your mom is negative doesn't seem to mean an automatic negative for you... at least, it wasn't in my case.  

 My dad chooses not to have the testing done, so I guess I'll never know if I got the gene from him or if I was just "lucky" enough to mutate on my own.  

Stay-at-home mom to 12-yo daughter and 8-yo son. 05/2008 stage iib er/pr+ her2-; And then 03/2012 stage iv, node and bone mets (spine, hips, pelvis, femurs); 03/2013 liver mets; 03/2014 liver mets GONE!

Surgery 05/19/2008 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 06/14/2008 Adriamycin, Cytoxan, TaxolHormonal Therapy 11/01/2008 TamoxifenHormonal Therapy 08/27/2012 TamoxifenSurgery 01/23/2013 Prophylactic Ovary Removal (Both)Hormonal Therapy 03/14/2013 FemaraChemotherapy 08/14/2013 Xeloda