Posted on: May 23, 2012 04:56 PM
Philadelphia, PA
Joined: Nov 2011
Posts: 15
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!!
Rachel xoxo "From Winter to Spring"
Dx 8/6/2010, IDC, 4cm, Stage IIIa, 1/20 nodes, ER+/PR-, HER2-
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Deyrl
Joined: Nov 2012
Posts: 31
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Dec 1, 2012 11:17 PM 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?
Dx 10/2012, ILC, 1cm, Grade 2Surgery 12/12/2012 Mastectomy (Right); Prophylactic Mastectomy (Left)
weety
southern california
Joined: Aug 2009
Posts: 1,093
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Dec 4, 2012 12:15 AM 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. 
Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Surgery Mastectomy (Left)Chemotherapy carboplatin, TaxotereRadiation Therapy ExternalHormonal Therapy FemaraTargeted Therapy Herceptin
Deyrl
Joined: Nov 2012
Posts: 31
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Dec 4, 2012 09:30 PM 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.
Dx 10/2012, ILC, 1cm, Grade 2Surgery 12/12/2012 Mastectomy (Right); Prophylactic Mastectomy (Left)
weety
southern california
Joined: Aug 2009
Posts: 1,093
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Dec 5, 2012 07:51 PM 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+Surgery Mastectomy (Left)Chemotherapy carboplatin, TaxotereRadiation Therapy ExternalHormonal Therapy FemaraTargeted Therapy Herceptin
Deyrl
Joined: Nov 2012
Posts: 31
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Dec 5, 2012 10:11 PM 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.
Dx 10/2012, ILC, 1cm, Grade 2Surgery 12/12/2012 Mastectomy (Right); Prophylactic Mastectomy (Left)
weety
southern california
Joined: Aug 2009
Posts: 1,093
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Dec 8, 2012 10:49 PM 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+Surgery Mastectomy (Left)Chemotherapy carboplatin, TaxotereRadiation Therapy ExternalHormonal Therapy FemaraTargeted Therapy Herceptin
NicoleJasie
Fort Worth, Texas USA
Joined: May 2012
Posts: 32
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Jan 20, 2013 01:10 AM 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.whenispeakhisname.blogspot...Dx 5/14/2012, IDC, 4cm, Stage IIIc, Grade 2, 12/14 nodes, ER+/PR+, HER2-Surgery 05/30/2012 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Chemotherapy 07/02/2012 Adriamycin, Cytoxan, Taxotere
weety
southern california
Joined: Aug 2009
Posts: 1,093
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Jan 22, 2013 12:15 AM 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+Surgery Mastectomy (Left)Chemotherapy carboplatin, TaxotereRadiation Therapy ExternalHormonal Therapy FemaraTargeted Therapy Herceptin
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Feb 3, 2013 02:56 PM 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 10:03 AM 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-