Anyone test Neg via CompBRCA testing but Pos via BART?

Wutzherface16

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!!

JoanQuilts

I can't answer all of your questions, but here is my experience:  I was diagnosed at age 34, with no prior family history and subsequently tested negative for BRCA 1 and 2.  Last December, 19 years after my first diagnosis, I was diagnosed with a new primary tumor.  I learned that BART was a new test since my first diagnosis, but since it is still considered experimental, given that I have minimal family history, Myriad will not cover the cost - and likely neither will my insurance company.

My onc looked at the figures and given my background (Ashkenazic Jew) estimates that my risk of testing positive is 1 in 200.  What to do, what to do ($700 cost for testing)?  I am so afraid of ovarian cancer (I had a BMX with my second diagnosis, so ovaries are the only things left).  I think I will suck up the $700 and do the testing.  

Wutzherface16

Thanks for responding JoanQuilts.  I think it is an outrage that you have to pay that much for the test.  My counselor told me that within the next year the insurance companies should start covering the cost of the test, and she had advised me to wait.  Clearly she's never had cancer before, because waiting isn't an option lol! Thank god I double checked my family history and qualified for the free BART or I can't say I would be able to afford it.  I think, given your two diagnosis, that you should really look into it.  I am also afraid of ovarian, and am looking forward to having an answer, atleast genetically.

I found two links in my search for answers that might help you make your decision for the test.  The first is a story CNN did in late 2011, which I found insane and makes me so glad I'm getting the BART testing.  The second is the calculator Myriad uses to assess your genetic risk.  Supposedly, I have a 26.6% chance of carrying a genetic mutation.

http://www.cnn.com/2011/10/27/health/brca-genetic-testing-ep/index.html

https://www.myriadpro.com/brca-risk-calculator

Mutd

W, did you list your full family history on BRAC test form? Check here in the first row of the table

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

if your ca and your mother's ca are both under 50, and there is an additional ovarian cancer, then you should be able to get the BART add-on for free?

Wutzherface16

Hey mutd... I couldn't follow that link... Could you repost?



I believe the rule is you need to have two first or second degree relatives (or yourself) diagnosed under 50 and any relative on the same side diagnosed with ovarian in order to qualify for free BART testing. Is that what you were asking? I think it's ridiculous we need to meet any sort of criteria when this type of information is available. It should be offered to all women who have faced breast cancer in order to give the and their families the best chance at a happy lifetime.

Mutd

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

I can't edit it in this forum, it doesn't get the spaces Could you try copying and pasting the line?

beacon800

I had negative BRCA1,2 but did not have BART.  That was in 2009.  Since then I have heard things that make me think the BART is a good idea.  What i heard was that Myriad's system for recommending who should have BART isn't really reliable.  So pretty much if I were you I would do the BART test.

On the brighter side, even if you were to test postive on BART, my understanding is that ovary removal isn't done til a woman is in the 35 year old range.  I am not expert on that, but I think it's true, which would mean even if you got a pos test result, you would not have been outside treatment guidelines by waiting this long.

Wutzherface16

Mutd - I was able to open it, thank you! This reaffirms that I should be covered.



Beacon - you are right, my treatment wouldn't have been any different, but my surgery definitely would have been. If I find out I have the mutation I will be opting to get the other breast removed, something I would have rather gone through all at once. Plus my 24 year old sister is pregnant and a mutation would definitely create worry for what may be going on inside her body. Either way, there's nothing I can do about it I'm just glad to be getting the test done.



Are you thinking of having the BART testing done?

BrieAli

Hi everyone. I have a slightly different question. Im 33y/o, mom was diagnosed with Bc at age 52. Her mom @ 54. Her sister @44. And her niece/my cousin @ 32. My mother is the only survivor. I have 3 daughters and have taken the brca and it was negative. Bart was also negative. But my genetic counselor wants my 2 sisters to be tested too. I'm still not clear on something. The doc said with my family history its still highly likely that I will get it too, even with a negative diagnosis. Is that right? Or did I misunderstand. Does a negative Bart only mean I don't have a gene mutation and wont pass it to my girls but I can still be diagnosed later? She still wants me to consider removing my ovaries. Can someone help me make sense of this? Thanks

Mutd

BrieAli, if you are the only person in your family to have been tested, then it means that they don't know the genetic cause of all the cancers in the family. Of course, most of breast cancer families like yours have BRCA1/2 mutations (and if it is the case in your family, then you didn't inherit this risk factor). Most, but not all.

Sometimes there is a mutation somewhere else, where it can't be detected by BRCA testing. If there is such an "undetectable" mutation, then everyone in the family might test BRCA negative, but it just won't be informative (the docs won't know who is at increased risk and who is not, and they may treat everybody as having increased odds of cancer).

That's why they always want to test the highest-risk relatives in a family, with the highest odds of BRCA mutations. Once a mutation is found, testing other relatives and interpreting test results becomes so much easier. But until a familial mutation is discovered in a family with a strong history of cancer, a negative result just isn't quite a 100% garanty of low risk.

msfoti

Wutzherface,

I am so sorry for everything you have endured, and at age 27 -- too much for such a young woman to bear!

This is a sore subject for me - and to make a long story short, get the BART test, if you haven't done so already. Myriad is a pain in the ass, and insurance companies are too, but this exact situation has happened 3 times in my family. My family history is awful and too painful to even put in this post, but to make a very long story short, my mother, her first cousin, and my first cousin (my mother's sister's daughter) all tested negative for BRCA mutations over the past 10 years - even as recently as 2009. Another first cousin of my mom's, who has ovarian cancer now, tested positive for a BRCA1 mutation. Only after I was diagnosed in Nov. 2010 at age 41 did it finally get figured out.

It never occurred to me to get genetic testing at the time of my diagnosis, because I thought it wasn't needed -- my mother had tested negative just 4 years before my own breast cancer was found. But my breast surgeon suggested I see a geneticist to be sure, and that was the first time I realized my mother's test may not have been entirely accurate. Thanks to a superb geneticist with some brains -- and to my health insurance company which actually agreed with his suspicions -- he ordered both the basic test and the BART testing, which revealed that I have a BRCA2 "deleterous" (sp?) mutation, which apparently does not show up on the "basic" test. (Interestingly, my mother and I are negative for her first cousin's BRCA1 mutation -- so there are not one, but two BRCA mutations in my family, which explains why our breast/ovarian cancer incidence is so prevalent over several generations).

It is absolutely criminal that Myriad Genetics does not make the BART testing part of the same damn test, and that so many health insurance companies only cover the "basic" test -- which misses my mutation entirely. I understand your frustration with all of this, and it is so hard to explain it to people who don't understand the testing process!! I did not find out my genetic test results until several months after my first lumpectomy. Had I known I was BRCA2+, I would have had a double mastectomy right off the bat, and my mother would have when she was first diagnosed as well, too. My mother is now stage 4, and had she known she was positive, she would not have chosen a lumpectomy the first time around. She has had breast cancer twice, and it is her second cancer (two separate types in two breasts, two years apart - should have been a major red flag to her oncologist??!! apparently not) that recurred in her liver and bones. Since I found out I was BRCA2+, I had the other breast removed and a full hysterectomy. But I understand that, at your age, this would be a VERY difficult decision to make. It's a lot of surgery, and it sucks. But for me, it was a no-brainer - my aunt died of ovarian cancer, I was 42 by that point and already had two children.  

Have you followed all of the ACLU's litigation regarding this issue? Myriad is being sued on the basis it should not be allowed to "own" the BRCA mutations and its actions have led to all of this nonsense. 

Since my diagnosis and genetic testing, all of the siblings and first cousins on my mom's side have been tested for our BRCA2 mutation and ALL OF THEM ARE POSITIVE. As scary as that sounds, the good news in all of this is that had I not had genetic testing, or rather had I not had the BART test specifically, none of them would have known their enormous risk. What happened to me, whatever the outcome, may have saved the lives of my relatives. If I accomplish nothing else in my life, at least my relatives -- and most importantly, my children -- will be able to do something about it.  

beacon800

Msfoti, your story is really important and it's also very sad. I am so sorry for your mom. It is a very frustrating situation.



I am going to look into the BART. Hate to spend all the money and face another round of testing but it seems like good idea. Thanks for sharing your story.

JoanQuilts

I decided to suck it up and go for my $700 BART testing and, if my insurance company denies payment, to fight it or work out a payment plan with Myriad. 

But, my onc told me something interesting:  Medicare has started to cover BART testing and when Medicare does something, most insurance companies follow suit. So he expects almost all insurances to start covering BART testing -probably by the end of the year if not sooner.

I hope this information helps someone.

Joan

dusterella

My story is exactly the same as msfoti's, except I am BRCA1+ - it's absolutely criminal what Myriad is doing Good luck!

Soccermom4force

FYI..An update on the lawsuit against Myriad



http://mobile.reuters.com/article/idUSBRE87F12K20120816?irpc=932



Decision was overturned AGAIN!

JoanQuilts

That is disappointing.  The only bright light, I suppose, is that more and more insurance companies are covering the cost of (at least) BART.

I had my BART testing done last month and it was negative!  I have a copay of $15.  That's a heck of a lot less than the $700 Myriad would have charged me had I had the test done earlier this year.

Mutd

NCCN changed its official guidelines this year, and BART is now recommended for everyone taking the BRCA tests. Insurance companies should take a cue from NCCN but it may take some time and some effort. Still it's very important news for anyone who considered BART in the past, but wouldn't do it because of insurance problems. And for those doing BRCA testing now, Myriad promised to hold DNA on file for a few extra months to give more time to sort out BART coverage questions.

Pointvalue

Hi Joan,



I was wondering if you need a prescription or referral from your doctor to have the BART test done?



Also, with a negative result, is your risk factor for ovarian cancer the same as the general population?



Always,

Elise

.

JoanQuilts

Elise - one of the oncologists in the practice I go to took the blood for the BART testing (he specializes in genetic testing).  So if a prescription was needed, I am sure he provided it.

Since I tested negative for BRCA 1 and 2 AND Bart, according to my onc I am only slightly more at risk for ovarian cancer than the average woman.  This slight but increased risk comes from the fact that I've had breast cancer - in my case, twice.

I hope that helps and wish you the best!

Pointvalue

Hi Joan,



Thank you for responding to my post. You have been through so much! Do you have a family history of breast cancer? Also, was it recommended to you to have your ovaries removed?



Thank you so much,



XO



Elise

JoanQuilts

No, I have NO family history of breast cancer.  My onc is not in favor of my removing my ovaries, because I tested negative for BRCA and BART.

Pointvalue

Wow! This disease has no rhym or reason to it! I am negative for Brca 1 and 2. I was tested 6 years ago. I want to ask about the BART testing. I have two daughters and knowledge is power. Thank you for sharing your story with me.

Pointvalue

Hi Joan,



I was wondering given your negative Brca/bart result and being dx with bc twice; are you closely monitored for ovarian cancer by a gynecological oncologist. If so, do you mind sharing what the surveillance is.?



Thank you so much,

Elise

JoanQuilts

Hi Elise - that's a great question!  I get a yearly gyno exam during which my gyno feels for enlarged ovaries, but that is it.  My onc does not recommend my having my ovaries removed - he explained that, given my BRCA and BART results are negative,  my risk is only slightly elevated vis a vis that of a "normal" woman.  I will get my gyno's input on that when I see him in a couple of months.

Pointvalue

Thank you Joan! I have been trying to find literature on this topic that is specific to familial bc and risk of ovarian cancer.



Many thanks,



Elise

mamabee

Hi all - I just learned a lot reading this topic. Briefly, I'm here because my 43-year-old (only) sister was just diagnosed with breast cancer. I was diagnosed last year at 47. My mom was diagnosed at age 75 and her sister had a "precancerous" tumor removed in 1983 when she was 45 years old. My grandmother, her only sister and her sister's only child all had premenopausal BC. My great-grandmother, according to her death certificate, died at age 88 of metastatic BC. I was tested for the BRCA mutations last year, was negative, but I'm not sure the test was done properly or was sent promptly to Myriad as I didn't get the results back for several months. Now that my sister has been diagnosed should I go to my MO and see if I qualify for more testing? Does anyone else have such a strong family history of BC but no BRCA mutation? I'm wondering not just for myself, but for my 2 daughters. 

weety

I was going to start a new thread, but I'm hoping that maybe one of you who have dealt with the BART issue might be able to answer my question.

I tested Negative for both BRCA 1 and 2 in 2009.  My results sheet says:

BRCA1 sequencing  No mutation detected

           5-site rearrangement panel  No mutation dectected

BRCA 2 sequencing  No mutation dectected

Does the 5-site rearrangement panel mean that I was tested with BART??????????

GC1

Weety, based on the results you have posted, you have not had BART testing.  Your testing is called "comprehensive BRACAnalysis" but did not include the BART test.

weety

Thank you for your help!

Deyrl

This might help eliminate confusion for someone else in case their insurance is still refusing payment on the BART test. I got a call from Myriad yesterday - the "patient services coordinator" went straight into telling me my insurance won't pay for the BART test and asked if I would be willing to pay the $700 myself.  I knew enough from having read through this forum, to ask immediately about financial assistance.  I'm wondering if she would have offered that information if I hadn't asked - if they aren't offering the information then I want others who read this thread to know to ask for it. 

Before I got that phone call I had already read the CNN article W mentioned back in May.  I'm wondering, has anyone else gotten a similar call from Myriad and NOT been offered the information on financial assistance?   I'm still waiting for my BRCA results - she said I should have them any day now.

weety

I'm curious why your insurance won't pay for the BART.  Did they not think you were high risk? 

I went back and asked about mine, and no, the BART was not included.  This was 3 years ago, so I don't know why it wasn't ordered in the first place.  THe geneticist seemed surprised also that it had not been ordered. I have Kaiser and she said there would be no problem covering it.   My dad was just diagnosed with pancreatic cancer, so we had "reopened" my genetics file and are going to check BART and also a pancreatic gene if the BART comes back negative.  She agreed that most cancers are sporadic and not related to our genes, but she said she is still hung up on the fact that I was 38.  She said statistics or not, she has to question cancers in people under 40.  Who knows how many other genes that make us susceptible are out there.  I'll find out on Monday about the BART one.