Anyone had BreastNext Testing Done??

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thirdgenerationmomof2
thirdgenerationmomof2 Member Posts: 248
edited June 2014 in High Risk for Breast Cancer

Hi ladies,



Curious if any of you have had BreastNext genetic testing done? I'm 3rd generation in my family with bc. I had BRCA and BART testing done at diagnosis but came back as negative. My genetic counselor thinks with my strong family history there may be a mutation in another bc gene.



Meeting with my genetic counselor next Wednesday for sample collection for test. She advised it will take 12-16 wks for results. Got the ok from my insurance company yesterday that they approved the testing.



Very curious to see what the results show as I'm very concerned if its only a matter of time before my 23 yr old daughter is diagnosed.



Appreciate any feedback on the testing!



Hugs,



Jen

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited April 2013

    Bump

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2013

    I've never heard about it. Is it new ? I'd be very interested in any info u have since I too have 23 yo dd.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2013

    Just looked up co on www. Interesting. Are you using it to determine your trmt? Not sure my ins will pay. Do you know how much test costs? I'll ask my friend who does gen research about it.

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited April 2013

    Hi Farmer,



    The test is fairly new. My genetic counselor says the test is recommended when you have a strong family history of bc but BRCA testing comes back negative. It looks at 14 other genes that are linked to bc. I am not using the test currently in my tx because the results take so long to get back (12-16 wks). However, depending on if I test positive for any of these other genes may alter my medical management not just for myself but for my children, my mom and my siblings.



    The test is fairly expensive but I don't think much more expensive than BRCA testing. I have BC/BS for insurance and they are covering the BreastNext test. They also covered and gave me no issues covering my BRCA and OncotypeDx either.



    I am having the test done next week so once I find out more info from my genetic counselor, I'd be happy to share the info with you :)



    Hugs,



    Jen

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2013

    So glad to learn about this! Thanks so much! At this point I'm not sure I want to know my results but knowledge is power. I just hate for my dd to have to start the screening stuff so soon. I would be very interested in knowing your results. Is your treatment plan in place? I have bcbs too. Thanks again.

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited April 2013

    Farmer you are most welcome! I have great concern for my dd as well. That is why knowing for me is so important. If there's a genetic link and my dd is at risk I want to know.



    So far my treatment is under way. I had BMX on 2/21, no rads, chemo will be decided tomm (but looking like not required) and will start this month on Tamoxifen for the next 5 years.



    Have your genetic counselor check with BC/BS to see if its covered under your plan. That is what mine did and came back it was covered under my policy.



    Jen

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  • goingforward99
    goingforward99 Member Posts: 25
    edited April 2013

    I am meeting with a genetic counselor on Wednesday at the Cancer Center, it will be interesting to hear what they say.

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  • lekker
    lekker Member Posts: 594
    edited April 2013

    My genetic counselor went with the Broca panel out of the University of Washington instead of the Ambry test after my BRCA/BART came back negative. The Broca looks at 40 genes. It takes 12 weeks for results so I should hear back in early May. I've already had a BMX and I'm scheduled for the hyst/ooph this week so there's not much more I can do surgically, but the results might have implications for my brother, his sons (the older one turns 18 this year) and my daughters. I am waiting for the results with mixed emotions.

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  • Deyrl
    Deyrl Member Posts: 31
    edited April 2013

    I had a blood sample taken for this test Dec. 12 and will finally meet 4/23 with my genetic counselor to get my results. I am BRCA negative and last November Humana refused to pay for the Bart test.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2013

    Deyrl - If you don't mind, keep us posted. I have never been afraid in the past to confront this #$%^, but for some reason the thought of more genetic testing is so very frightening right now. My ins paid for BART, but this is the first I've heard of Breastnext.

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited April 2013

    Farmer I had BreastNext testing done on 04/10. Results are not due in until mid July or August (12-16 wks for results). My insurance-BC/BS paid for both BRCA and Bart with no issues. They are also covering BreastNext test. Not sure if its just my policy coverage or because I have high family risk of bc. Either way, I was thrilled they would pay for further testing! I'm negative for BRCA and Bart but being third generation in my family with bc, I wanted further testing :)



    Hugs,



    Jen

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  • lbrewer
    lbrewer Member Posts: 766
    edited April 2013

    There is a genetic condition called HNPCC  Heriditary Nonpolyposous Colon Cancer.  It carries a 50% chance of colon cancer.  It also carries 80% colon, 60% endometrial and about 12% uterine.  Has anyone else in your family had any of these?  Its a simple blood test.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2013

    My hubby had polyposous, but tested negative for any known genes.  He had 1/2 his colon removed about 6 years ago, and has been on Celebrex. Amazing he hasn't had any trouble physically, and hasn't had any polyps in a couple years. Celebrex must be doing the job. No colon cancer on my side, but I do have male breast cancer a few generations back, my sister had Wilms disease, my cousin had prostate cancer in his 40s. And that is the "safe side of the family!"

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  • Flautalee
    Flautalee Member Posts: 118
    edited April 2013

    I just learned about the new genetic testing next week and I plan to have it done because I am BRAC 1 and 2 neg, BART neg. You were so smart and brave to have the prophylactic bilateral mastectomies. (Even if it didn't turn out to be prophylactic for one breast.) Mammograms do not detect many cancers, and this stuff about that a BC growing for 4 years before it is found on mammo is ridiculous. I found a golf ball sized tumor 6 months after a "clean" mammogram in 2000. You were smart!.

    Same breast as previous BC and mastectomy. Tx: 4 rounds of T/C plus 28 rads. I am told that this very rare~~1/32,000 BC treated w/mastectomy.

    DX 6/2000 stage 2 > 2.0 cm Triple Negative. Tx: 4 Rounds of A/C. Bilateral mastectomies.
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  • lekker
    lekker Member Posts: 594
    edited April 2013

    My Broca panel came back negative for any mutations in the 40 genes they test. It's good news but still doesn't explain the cancers. Premenopausal breast cancer is suspicious, colon cancer at 30 is almost unheard of. My genetic counselor told me to call her in a year in the hopes that advances in genetics might be able to tell us more. Kaiser paid for full BRCA sequencing plus BART and the Broca panel.



    http://web.labmed.washington.edu/tests/genetics/BROCA

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  • Yayme
    Yayme Member Posts: 107
    edited April 2013

    Hi Ladies...just posting the info from Ambrygen....on newly discovered genes...as I read on, they are thinking of considering the negative testing of BRCA 1&2 women with family history, and personal breast cancer history...BRCA3.....I read it will happen with 2 years...



    http://www.ambrygen.com/tests/breastnext
    Also

    http://www.dailymail.co.uk/health/article-72235/Fresh-hope-breast-cancer.html



    love to all

    Lisa

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited April 2013

    Lekker good tp hear your broca panel came back negative! Still got awhile before my test results will be back.



    Lelela thanks for the info and the links. Very interesting! There is still so much we just don't know about all these genes and how they can be linked to bc. Hoping in the next few years, we know so much more!



    Jen

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  • Golden01
    Golden01 Member Posts: 916
    edited April 2013

    My Mom was diagnosed with breast cancer at age 83. Five of seven female cousins on my Mom's side of the family have developed breast cancer. Like me, most of my cousins developed breast cancer after age 50 (one was younger). My insurance paid for BRCA 1 and 2 tests, BART, and the BreastNext. The tests for BRCA 1 and 2, along with the BART, were negative. I had the blood drawn for the BreastNext on February 1 but don't have the results yet. The physician and genetics counselor that we met with said it was likely I'd need another visit to discuss the results. I go to the National Cancer Institute's designated Research Center in my state (about 2 1/2 hours away) to see the genetics counselor rather than one who is close to home.

    My MO (who is close to home) didn't feel the testing was necessary because it was my cousins not "first line relatives" like my sisters who had breast cancer. He also didn't feel insurance would pay for it. Going to the research center, they had no trouble getting approval from my insurance company. Going there is worth the drive!

    After a lumpectomy with bad margins, I opted for BMX and they found flat atypia in the other breast. Both the breast surgeon and MO indicated that was likely to develop into cancer down the road. I want to do all I can to learn about other risks the genetic testing might show, especially for ovarian or colon cancer. This age of personalized medicine is exciting. I am sure we will know even more five or ten years from now. 

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  • Golden01
    Golden01 Member Posts: 916
    edited April 2013

    Bump

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited September 2013

    Ladies just a follow up to this topic...my test results from BreastNext came back last week. They looked at 14 other genes. 13 of them came back as negative. 1 came back with a variant. The BARD1 gene that is not only linked to bc but ovarian cancer as well (makes sense, I have both in my family history). They said I have a high probability that my bc is inherited and I have a mutation in the BARD1 gene. There is a 3x the risk of developing either cancer for any females in my family. I'll be involved in the family studies lab with Ambry.



    Up next is my daughter for testing and I'll be discussing with my MO in November on whether I should keep my ovaries or not.



    Jen

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2013

    Jen - Thanks so much for the follow up. I was thinking today about my DIL whose mom is BRCA 1. I thought that at least DIL will know for sure her risk after the testing, so in that sense it is a good thing for something to have shown up for you. Praying that your DD is negative for the variant.



    Would you mind telling me how much the test cost, and once approved by your insurance co, was it treated like any other medical cost? I guess I need to get in touch with my genetic doc, to see if he thinks I should do the testing.



    Thanks again for your information.

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited September 2013

    Hi Farmer glad to share my results! I'm not sure how much the test cost but I can find out for you. I have BC/BS of IL for insurance. My deductible was met in January (not long after i was diagnosed). My insurance covered the test 100% with no out of pocket cost to me since i had already met my deductible.



    I'll check with my genetic counselor in the am and find out the pricing for you. She told me if you're BRCA negative but have a strong family history of bc, having the BreastNext testing done is a good idea.



    Hugs,



    Jen

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited September 2013

    Hi Farmer just wanted to let you know I checked on the costs of this test. Looks like they charge $4290. My insurance adjusted the amount and paid out $3842. This was covered at 100% for me since my deductible for the year has already been met.



    Good luck and keep us posted!



    Hugs,



    Jen

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2013

    Jen Thanks so much for the information. I really appreciate. I guess I'll ask my onco about it next month. I may load the cost into next year's expenses. Thanks again!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2013

    Jen - I found this very interesting article re: Breastnext.



    Would you mind sharing what mutation they found?



    Thanks so much!





    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3364760/

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  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited September 2013

    Hi farmer it won't let me click on the link. Can you pm me and I'll send you my email address to send the link to?



    My results aren't a definite mutation in the BARD1 gene. There is a definite variant in that gene but its inconclusive on whether they can say for sure it caused my bc.



    My geneticist emailed me yesterday. She signed me up for the Family Studies lab with Ambry Genetics. They told her they want to test my mom for FREE! They want to see if my mom tests positive for the same variant to give them a better idea on whether our bc is inherited or not.



    Jen

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