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All TopicsForum: BRCA1 or BRCA2 Positive → Topic: Anyone test Neg via CompBRCA testing but Pos via BART?

Topic: Anyone test Neg via CompBRCA testing but Pos via BART?

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

Posted on: May 23, 2012 04:56PM

Wutzherface16 wrote:

Hi everyone :) I am a 25 year old BC survivor, I was diagnosed right after I turned 24 in 2010.  Given my age, when I was first diagnosed they immediately tested me for the BRCA1 and 2 mutations, which came back negative.  I just went to see a genetics counselor for the first time (thanks to my onc never recommending one) and she recommended I get the BART testing (BRCA Rearrangement Testing).  My father's mother was diagnosed at 44 and her mother had ovarian cancer, so the counselor feels I am still at high risk for a mutation.  Can anyone share their experience with this testing and if they received postive results via BART but negative via the comprehensive BRCA testing?  I am furious that I am just hearing about the BART testing, and if I end up having a mutation I know there will be serious decisions to be made.  I only had a bilateral mastectomy the first time around.  Thanks so much!!

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Dec 1, 2012 11:17PM Deyrl wrote:

Weety, my BS ordered BART, but the insurance company says after investigating my case they determined it would be experimental. Myriad says I qualify as high risk.

My doctors should have gotten my BRCA results last week, but apparently my BS feels it would be better for me to wait until I see a geneticist on Tuesday to get my results. I'll probably ask for the BART test if I'm BRCA negative just because I personally want to know if my cancer is related to either of my dad's parents' early cancer deaths.

Is your dad doing ok?

Boobless and happy about it - my guy says I'm more aerodynamic now. While I appreciate positive thinking, I think it's important to put this out there too: Life hurts.

Dx 11/9/2012, ILC, <1cm, Grade 2, ER+/PR+, HER2-Dx 12/12/2012, IDC, <1cm, Grade 2, 0/3 nodesDx 12/12/2012, DCIS, 2cm, Grade 2Dx 12/12/2012, LCIS, 1cm, Grade 2Surgery 12/12/2012 Mastectomy (Right); Prophylactic Mastectomy (Left)
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Dec 4, 2012 12:15AM weety wrote:

Got the BART results today--Negative.  Now we are looking at testing for a pancreatic cancer gene--PALB2 gene.  They want to test my dad first and then go from there.  Another 2-3 week wait. 

Deryl, Let me know what happens at your appt tomorrow. Smile

Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Targeted Therapy HerceptinHormonal Therapy FemaraSurgery Mastectomy (Left)Radiation Therapy ExternalChemotherapy carboplatin, TaxotereSurgery 04/19/2010 Prophylactic Ovary Removal (Both)Surgery 04/10/2013 Prophylactic Mastectomy (Right)
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Dec 4, 2012 09:30PM Deyrl wrote:

Weety, I found out I'm BRCA negative and the geneticist believes from a statistical standpoint it would be very unlikely I would have BART come back positive.  She said there is enough of a family history in my case to suspect some sort of mutation, but whether or not there is a test yet that would find it - who knows.  I don't have any nieces, sisters, or daughters - I do have two sons and I do worry a little for them.  I will probably stop here with the testing unless my insurance covers the new BreastNext test, which I doubt it will.  It turns out my insurance is one of the very last holdouts against paying for the BART test.

Boobless and happy about it - my guy says I'm more aerodynamic now. While I appreciate positive thinking, I think it's important to put this out there too: Life hurts.

Dx 11/9/2012, ILC, <1cm, Grade 2, ER+/PR+, HER2-Dx 12/12/2012, IDC, <1cm, Grade 2, 0/3 nodesDx 12/12/2012, DCIS, 2cm, Grade 2Dx 12/12/2012, LCIS, 1cm, Grade 2Surgery 12/12/2012 Mastectomy (Right); Prophylactic Mastectomy (Left)
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Dec 5, 2012 07:51PM weety wrote:

I can relate to how you must feel.  I was kind of "bummed out" when I found out I was negative.  I know that sounds wrong, but I really was hoping that it would explain all the cancer in my family.  I have to keep reminding myself that there are probably other genes out there that make us susceptible to cancer that have not been pinpointed yet. 

I haven't heard of the BREASTNext test.  WHat is that?

Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Targeted Therapy HerceptinHormonal Therapy FemaraSurgery Mastectomy (Left)Radiation Therapy ExternalChemotherapy carboplatin, TaxotereSurgery 04/19/2010 Prophylactic Ovary Removal (Both)Surgery 04/10/2013 Prophylactic Mastectomy (Right)
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Dec 5, 2012 10:11PM Deyrl wrote:

That is exactly how I feel - it does sound wrong but it would be nice to have an explanation.  Plus I never got to know any of my grandparents and I guess I am wishing for a tangible connection.  Now that seems kind of stupid, since I could point to any number of things, like my crooked teeth and goofy smile, that look like my grandma's.  The cancer is dramatic though - and my dad has always been quiet about what he went through with his parents, so I focus on that. 

The geneticist told me BreastNext JUST became available very recently - in the past month or two?  If you google it, it says Ambry genetics does it, and it lists several genes they test.  Takes two months to get results.  One of the genes they test also is a factor for pancreatic cancer, so maybe you are having that one tested already.  I read a critique of this test saying it costs a lot and a lot of the genes on the list - except for the CHK2 or check2 (?) - are only going to be a factor for a tiny minority of women.  My geneticist said Humana might pay for it just because it's so new they haven't figured out yet what their policy is on it. 

Boobless and happy about it - my guy says I'm more aerodynamic now. While I appreciate positive thinking, I think it's important to put this out there too: Life hurts.

Dx 11/9/2012, ILC, <1cm, Grade 2, ER+/PR+, HER2-Dx 12/12/2012, IDC, <1cm, Grade 2, 0/3 nodesDx 12/12/2012, DCIS, 2cm, Grade 2Dx 12/12/2012, LCIS, 1cm, Grade 2Surgery 12/12/2012 Mastectomy (Right); Prophylactic Mastectomy (Left)
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Dec 8, 2012 10:49PM weety wrote:

Thanks, I'm googling it as I'm reading!

Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Targeted Therapy HerceptinHormonal Therapy FemaraSurgery Mastectomy (Left)Radiation Therapy ExternalChemotherapy carboplatin, TaxotereSurgery 04/19/2010 Prophylactic Ovary Removal (Both)Surgery 04/10/2013 Prophylactic Mastectomy (Right)
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Jan 20, 2013 01:10AM NicoleJasien wrote:

I was negative according to the BRCA test, but was BRCA 2 positive after they ran the BART test so I would do both if you can.

Check out my BC blog! www.walkbyfaithnotsight.com

Dx 5/14/2012, IDC, 4cm, Stage IIIc, Grade 2, 12/14 nodes, ER+/PR+, HER2-Dx 11/21/2013, IDC, Stage IV, Grade 3, ER+/PR+, HER2+Surgery 05/30/2012 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Chemotherapy 07/02/2012 Adriamycin, Cytoxan, TaxotereRadiation Therapy 11/13/2012 ExternalHormonal Therapy 11/18/2013 TamoxifenChemotherapy 12/02/2013 Abraxane, Gemzar, Taxol
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Jan 22, 2013 12:15AM weety wrote:

Well, I ended up testing positive for a different gene--PALB2.  Totally different than BRCA 1 or 2 or BART. 

Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Targeted Therapy HerceptinHormonal Therapy FemaraSurgery Mastectomy (Left)Radiation Therapy ExternalChemotherapy carboplatin, TaxotereSurgery 04/19/2010 Prophylactic Ovary Removal (Both)Surgery 04/10/2013 Prophylactic Mastectomy (Right)
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Feb 3, 2013 02:56PM Golden01 wrote:

I was negative for BRCA1, BRCA2 and BART. Had my blood drawn for the BreastNext test on Friday so will wait for the results. My mother has breast cancer and five of my twelve women cousins on her side of the family have had breast cancer too. My oncologist was doubtful than my insurance would pay for any testing but I chose to go to the university-based cancer center in my state to see their genetics counselors. They have been successful in getting approval from my insurance company for each of the tests. I did need to see a doctor (a geneticist) for the BreastNext test to be covered. One of the main reasons I wanted to go ahead with the test is to share any results with my cousins as well as know more about my own risk for other cancers.

At the visit, they explained that about one third of the genes in the test have a known link to cancer, about one third are known to not be linked to cancer, and another third they aren't sure about. In other words, the test may result in more questions and unknowns but I think information, of any kind, is helpful to me.

Mucinous Carcinoma, Hypercellular Variant; Oncotype DX 27,

Dx 7/8/2011, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Feb 5, 2013 10:03AM IllinoisNative wrote:

Well, I was diagnosed at 36 with breast cancer so I qualified for the BRCA 1 test and it was negative. When that came back negative, my geneticist said I didn't really need the BART test since I had less than a 1% chance of being positive.  I really wanted the piece of mind so I asked her to look into whether my insurance company would cover the BART test (this was in Dec 2010) and they did...I don't know if it was my age or what as to why they covered the test (I had Blue Cross/Blue Shield at the time).  My maternal grandfather's mother, sister, and niece all had breast cancer but it was considered too far removed for them to be a risk for me especially since my mother's family is huge and none of them had cancer.  Both of my parents tested negative for the BRCA gene so they did a paternity test on my dad because the liklihood of him not being my father was greater than the liklihood of me being a first generation BRAC 2 carrier.  Turns out I'm the first generation BRCA 2 carrier and the forth in history.

So I had less than a 5% chance of getting breast cancer under 40, I had less than a 1% chance of being BRCA 2 positive, and I had an .05 chance of being first generation.  You can imagine my irritation when people say you have statistics on your side that you will beat this. Don't talk to me about statistics.  LOL

I would get the test no matter what the cost because of piece of mind.  They don't do the test enough to know who else would be first generation or not.  Heck, they haven't even identified all the genes that may be causing this.  I know a few women who developed ovarian cancer after breast cancer when they tested negative for both BRCA genes.  It's a crap shoot either way.

BRCA 2 Positive

Dx 11/27/2010, IDC, 4cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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May 22, 2013 12:11PM Devgreene wrote:

I am 33 yrs old in 2011 I was negative for BRCA 1&2, then tested for BART. I lost my Mother and her younger sister to Breast Cancer. Her older sister had Breast cancer twice. My Dads sister is a survivor. Under BART I tested positive for a BRCA 2 gene. While undergoing appts for a prophylactic mastectomy I developed 3 tumors. 14 moths ago I had the surgery and I believe it was just in time. The pathology showed one tumor had "pre cancerous" cells. None of my family tested. My cousin is 2 years older and has BC.

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Aug 12, 2013 12:20PM NanaMimi wrote:

Hello.  I don't know where I fit it here but my problem is a I am an adoptee and have no info on my birthfather's family.  I am 65 and was dx this year with TNBC.  Even though I don't meet the criteria for insurance coverage I went ahead and had the BRCA 1 & 2 testing done and the results were neg. (I will be billed $3340!) Now my onc wants the BART test done for an addtional $700.  Yes, me life is worth more than that but I'm just wondering if it's really necessary.  At age 65 I would consider having a bilateral mastectory and complete historectomy and be done with it all!!!  I just finished 4 rounds and chemo (TC) and will soon start radiation.  The tumor was 1.1 cm, clean margins and 0/3 LN.  I was going merrily on my way to recovery when this BART business popped up.

Any thoughts?

Thank you.

Nana Mimi

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Aug 12, 2013 05:43PM JoanQuilts wrote:

NanaMimi - are you sure your insurance won't cover BART?  I was diagnosed with bc for the second time about a year and a half ago.  At first, my insurance wouldn't cover.  But then Medicare started to cover and my onc told me this was a good sign - that when Medicare starts to cover a procedure, commercial insurers often follow suit.  Sure enough, my testing was covered.

PS - I was negative for BRCA and BART, yet I had breast cancer for the first time at age 34, and then against at 53.  Go figure!  (Best of luck!).

Joan

Diagnosed 10/92, lumpectomy, CMF. Diagnosed with second primary 12/11 (19 years later!). . BMX with TEs to implants; 6 rounds of TC.

Dx 12/6/2011, IDC, <1cm, Stage I, Grade 3, 0/0 nodes, ER-/PR-, HER2-Surgery 01/06/2012 Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)Chemotherapy 02/06/2012 Cytoxan, Taxotere
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Apr 2, 2014 02:11PM txmomof2 wrote:

I know this is an old post but just wanted to vent.  I was diagnosed in 2012 at the age of 35.  Was negative for the BRAC test.  Now the BART test recently came about but insurance (Aetna) won't cover it.  They said if I had had the comprehensive test (both BRAC and BART at the same time), then it would be covered.  They don't seem to understand that the BART test wasn't even available for me when I was diagnosed.  Myriad did offer financial assistance for the $700 but I'm curious if other insurance companies are starting to cover the test and it would be worthwhile to wait a little bit to have the test done.  My genetic counselor also mentioned Li Fraumeni which is a rare genetic disorder.  If I test negative for BART, then they'll test me for that.  Has anyone had this test done and did insurance cover it?  If insurance covers it, I might get that test done first!

Oncotype dx: 5; ki-67 1%

Dx 2/15/2012, IDC, 2cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-Surgery 03/23/2012 Mastectomy (Left); Prophylactic Mastectomy (Right); Reconstruction: Tissue expander placement (Both)Surgery 03/23/2012 Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Hormonal Therapy 05/04/2012 TamoxifenSurgery 08/01/2012 Reconstruction: Breast implants (permanent) (Both)Surgery 11/30/2012 Reconstruction: Nipple reconstruction (Both)
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Apr 2, 2014 08:44PM lekker wrote:

Kaiser paid for BART for me late 2012 or early 2013 (I'm starting to forget exact BC-related dates which is great!). I will never understand how myriad justifies not including BART in every test.  Yes, the mutations that BART looks for are very rare, but the U Washington folks showed that myriad was missing 12-20% of deleterious mutations when they didn't run BART too.  Couldn't your genetic counselor (or a geneticist MD) appeal the decision?  They would have a better chance winning if you could show the utility of the additional testing for you - in other words, what would it change?  Would you have a prophylactic oophorectomy if you are positive?  You could always have the genetic counselor test you for the TP53 mutation (Li Fraumeni) first and then if that's negative, you could push for BART.  The U of Washington's Broca panel can test for mutations in over 40 cancer related genes - maybe your counselor could look into ordering the panel for you and it would be a full BRCA sequencing along with TP53 and a bunch of others.  The clear downside to this test is how long it takes to get results - 3 months!

Colorectal carcinoma in situ January 2000 (age 30), and now this...

Dx 7/2012, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 08/06/2012 Lumpectomy (Right)Surgery 10/03/2012 Mastectomy (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)Surgery 03/12/2013 Reconstruction: Breast implants (permanent) (Both)Surgery 04/11/2013 Prophylactic Ovary Removal (Both)
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Apr 3, 2014 03:00PM Nan54 wrote:

I just had these done in the summer or 2013. Aetna did not pay for the BART test after I was negative in the BRCA tests. It still makes me angry to think about the $700 that this cost when other insurances are clearly paying for it...

Dx 5/31/2013, IDC, 1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Apr 7, 2014 01:32PM txmomof2 wrote:

I did speak with my genetic counselor and she is working with Myriad and Aetna to try and get it covered.  Fingers crossed! 

Oncotype dx: 5; ki-67 1%

Dx 2/15/2012, IDC, 2cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-Surgery 03/23/2012 Mastectomy (Left); Prophylactic Mastectomy (Right); Reconstruction: Tissue expander placement (Both)Surgery 03/23/2012 Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Hormonal Therapy 05/04/2012 TamoxifenSurgery 08/01/2012 Reconstruction: Breast implants (permanent) (Both)Surgery 11/30/2012 Reconstruction: Nipple reconstruction (Both)
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Apr 7, 2014 07:43PM lekker wrote:

The insurance companies are willing to pay over $3000 for a test that they know isn't complete - but won't pay the extra $700 to get a definitive answer.  It's criminal that myriad doesn't automatically include BART if the main test is negative and idiotic that insurance won't pay for it.  Txmom - I hope your GC is able to convince Aetna to pony up the cash.

Colorectal carcinoma in situ January 2000 (age 30), and now this...

Dx 7/2012, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 08/06/2012 Lumpectomy (Right)Surgery 10/03/2012 Mastectomy (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)Surgery 03/12/2013 Reconstruction: Breast implants (permanent) (Both)Surgery 04/11/2013 Prophylactic Ovary Removal (Both)

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