How much is BRAC testing?

intrepidspirit

Pink Sisters-

I was diagnosed with breast cancer last December.  Stage 1, Grade 3, dcis and invasive carcinoma.  Had a lumpectomy in February,

no lymph node involvement, followed by 4 treatments of chemo.  (UGH)  I begin radiation next week- 6 weeks, 5 times a week.

I've had every test possible except for BRAC testing.  My maternal grandmother had breast cancer and my sister had endometrial cancer.  There is a family rumor that my father had breast cancer.  My mom is too old to remember things clearly, my sister is convinced my dad had cancer, and I'm  convinced he did not.  I remember when he went to the doctor and came home with a small  band aid over his nipple.  He never had any kind of aftercare treatment.  (Like chemo)  Anyway, I'm wondering if I should have BRAC testing done.  I have anthem Blue Cross insurance.  I only hesitate because I have already had the surgery done, have my aftercare therapy set up, and wonder what difference it would make if I had BRAC testing?  I will already be closely monitored for the rest of my life--but if it is beneficial to have the test, I would.  but I wondered if anyone out there could give me a ballpark idea of the cost?

  It's been a hard battle, but I'm almost done.  Chemo is behind me, I think anything after that will be a  breeze! 

God bless each and every one of you.  It's true--that which does not kill you, makes you stronger!

exbrnxgrl

See if you can speak to a genetic counselor who can take an in depth family history and determine if there is a likelihood that you might have a BRCA mutation. Ethnicity is part of it as well. The test itself is in the 3,000.-4,000. range. It does not matter if you had surgery or tx already. I had mine done months after surgery. Carym

Moderators

Hi intrepidspirit,

In addition to the helpful information from exbrnxgirl, you can get some great info from the main Breastcancer.org site's section on Genetic Testing, including information on Genetic Testing Facilities and Cost.

Hope this helps!

--The Mods

Mardibra

I was tested as well.  Was told by the genetic counselor that the test was approximately $3,500.

JoanQuilts

The advantage of knowing your BRCA status?  If positive, you will be at higher risk of ovarian cancer, which is difficult to diagnose early.  Having this information in hand will allow you to make a decision as to whether or not you want to keep your ovaries.

PS - I also have Anthem BC/BS and while I had BRCA 1 and 2 testing done years ago with my first diagnosis, I only just had BART testing done (which I believe is included in today's BRCA 1 and 2 testing) and from what I understand Anthem BC/BS is paying.   But call them up to make sure.

exbrnxgrl

Do most insurance companies cover testing for anyone who asks for it? I belong to an all inclusive HMO and they go through a process to determine if you meet the profile for someone likely to carry the mutation. This includes extensive family history, ethnic history, meeting with a genetic counselor and psychologist and an online class. I think I now have a degree in BRCA

Caryn

JoanQuilts

I don't think so Caryn.  I believe there needs to be a compelling reason - e.g., diagnosis at an early age or a family history.  Always best to check with one's insurance company. 

Mardibra

I was surprised my insurance approved the test.  I dont have a family history...none, and was diagnosed at 44 (hardly young).  

exbrnxgrl

Yes, that's what I thought too. It seems that many women new to the bc world don't realize this. Many also don't realize that only a very small % of bc cases are connected to a genetic mutation (of the mutations that are known). According to my online BRCA test, between 80 and 85% of breast cancers have no known genetic connection. So when someone says, "I have no family history of cancer" , they are among the vast majority of women who develop bc. The family genetic connection, as is currently known, is quite rare. Caryn

JoanQuilts

Young = pre-menopausal in the breast cancer world.

Mardibra

Well then, im happy to be "young"!  

jill47

My breast cancer surgeron thought I was worthy of getting the test done based on the following criteria: 1) young age 47/pre-menopausal (JoanQuilts you are right!) 2) maternal side: grandma breast cancer, grandfather prostate cancer (died from it age 47) and great grandfather breast cancer; so strong family history.  Total cost $3,400, my insurance company covered it as an in-network provider. To my relief the results were (-). Another reason I got the test is if I got (+) results, my close female family members (sister, mother, nieces) could get the BRCA test at the same lab for $375.  So it's a benefit to your female family members to be tested.

exbrnxgrl

Yes, once I knew I met the profile for possible genetic mutation my main reason for getting it done was for my daughters and granddaughter. BTW, if you are of Askenazi Jewish heritage you will probably meet the profile. Sigh, once again, the chosen people.

Caryn

JoanQuilts

Caryn - It's such a crap shoot. I am of Askenazi Jewish descent, I have had breast cancer twice (the first pre-menopausally, the second post  chemo-pausally) and I tested negative for BRCA 1 and 2, and, just last week, negative for the BART mutation. 

I asked two different oncologists in my group why this had happened to me a second time.  There has to be SOMETHING going on in my body that makes breast cancers on a regular basis!  One of the oncos said it could just be an unusual sporadic occurence (lucky me!); the other that even if there is not a genetic defect, there are certain things that can go on in one's body that make one more susceptible to certain disease states.  

I will probably never know. 

howhm02l

When I had my BRCA testing done, ( I am BRCA2+), I was told that the testing company would contact me if it would cost more than $375 so the will not do the test and then send you a huge bill. You will know the cost beforehand. I was not contacted and got my results a month or so ago. It has not yet posted on my insurance benefits statements so I do not know what the total cost was.



My mother and her sister were diagnosed pre menopausal so I met the family history criteria. I am 40 and have DCIS so am having BMX on 8/16. They have also recommended ooph because with my genetic status I have 25% chance to develop ovarian cancer.



Hope that helps.

RobinJoy

My sister and cousin tested negative for the BRCA mutation. Practically every woman on my mother's side has had either ovarian or breast cancer. My sister, cousin and aunt were pre-menopausal. My aunt was only 38. So my gp thinks I should also be tested. I think it's highly unlikely for the gene to express in me and not my sister and cousin. My family may have some ashkenazi heritage via my maternal grandmother who had breast cancer. Her maiden name was Kohl and she was from the lower Rhine region known as Swabia where there were several Jewish families. However she was catholic and I have no idea when her family might have converted. Also since she was catholic they may have married outside of her ethnicity. My maternal grandmother married an Irish man. I'm still trying to weigh wether it would be useful or not. Especially now since I know how costly the test is!

exbrnxgrl

Robinjoy,

This is where genetic counseling could help. They could review your family history, including the negative results of your family members and help you decide if the test would benefit you. Most insurance coverage will pay for it if you fit the profile.

Caryn

jill47

howhm,  thank you for your post, your (+) BRCA2 mutation makes total sense with your family history, I'm so sorry you have to go down a different and more difficult road than we (-) women.  However thank goodness for science, you and your MO can carefully treat/monitor your ovarian cancer risks going forward.  My heart is sincerely with you as you prepare for your BMX on 8/16.  It's a tough surgery, please allow yourself to get through it before thinking of future surgeries ( - :

RobinJoy

Thanks, Caryn. I'll have to check into that. Right now I don't have insurance. But ironically enough, I will if my biopsy turns out to be cancer (medi-cal).  

exbrnxgrl

Robinjoy,

Good luck and hoping you do not have a positive biopsy.

Caryn

howhm02l

Thanks so much, Jill. I tested positive about a week after I got the results of my biopsy. It has been a crazy couple of months. I was able to put everything out of mind to a large extent for a few weeks, but as the surgery date approaches, I am getting scared! Not as much from the surgery and recovery but from the final surgical pathology and whether I jus have pure DCIS at this point.



Robin - if either one of your parents carry the gene then you would have 50-50 chance of having it. For you, it would not matter whether your aunt or cousins have it. Whether your sister has it would be important for you but not determinative. I did the genetic counseling about 3 years ago, and did not get tested then. Because my mother passed away from BC when she was 38, there was no "control" so they did not know what to make of results if I had come back negative. I had a suspicious MRI in June that led me to get the BRCA test done. At least now we have a control so if either my sister or brother test negative, then it will be a true negative because they would have a 50-50 chance of getting the gene that I now assume my mother had.



Good luck with your decision. It is very tough. I put it off for a long time.



Heather

MiamiBC

I was also told that if my insurance company did not pay that my charge would be $375.00.  But my insurance company approved and paid more than $3000.

RobinJoy

Me, too, Caryn! 

Thanks howhm021 for explaining it. That makes perfect sense. 

That's  interesting MiamiBC. It says alot about our medical system.

SpecialK

I was 54 at dx and a lumpectomy candidate.  I am also adopted with no access to family history.  I was BRAC tested on the day of diagnosis because if I was positive for the mutation the surgeon's recommendation would have changed to BMX.  I elected BMX for other BC related findings.  My insurance did cover the expense without consultation with a genetic counselor, although I understand that it has since ceased coverage for this test.  Here is a link from Myriad's website concerning insurance and costs:

http://www.bracnow.com/considering-testing/Brac-analysis-payment-insurance.php#5

exbrnxgrl

Without a family history, genetic counseling would have been a bit pointless, although it can help you understand tx options and the ramifications of a positive test. It is, however helpful in deciding whether or not you should have the test, if family history and ethnicity support it. Caryn

2FriedEggs

i was tested for Brac 1&2 but my insurance would not cover the BART testing which is disappointing. My doctor had an application from Myriad with different groups of criteria for the doctor to fill in  to determine the chances of coverage. I met the criteria of having a 1st degree relative that had it (mom-40 and young cousin) plus mine was concidered bi-lateral even though the one side was LCIS. (I had other relatives that had it but they were considered too distant or too old when they got it as far as qualifying me for the test) Like others had said I was advised that they would call me before hand if I would have to pay any more than $375 so I could decide if I still wanted it. I wasn't required to do the genetic  counseling since my treatment depended on the results. Like SpecialK, My doctor advised it for treatment option purposes-lumpectomy vs DMX and possible oomphrectomy. He also said that if I was positive (which I was not) there was a possibility that although I have no sisters, that the males in the family could also carry the gene and pass it on to their children, so they would need to be made aware. Since the 2 different bracs are associated with different cancers, like ovarian and pancreatic/other gastric cancers the onc wanted to know about any relatives that may have had those. Mine came back negative, altho like I said I didn't have the 2rd part, the BART test, which is I guess the absolute determination on Brac. My ONC still believes that there is a heriditary association of some kind that is yet to be discovered. Even though I was negative, I eventually decided to go for the full whammy anyway as it gave me more peace of mind. 

exbrnxgrl

Two fried eggs, you make a few good points. The primary reason for BRCA testing is to drive tx options, both for those who have been diagnosed and preventative options for those not dx but who test positive for BRCA. Genetic counseling, in addition to determining if you meet the profile for testing helps you thoroughly understand what having the BRCA mutation means and, for those who have not been dx, what your choices are in terms of prevention. Having the BRCA mutation doesn't mean you will definitely get bc and if you are young and haven't had children you might make different choices than a woman my age. Although I was negative, both of my dd's had already started thinking about what they would do if they tested and were positive.Yes, it is also important to realize that the gene is not just passed down by your mother but could be by your father as well. Like your doctor, many believe there are other genetic mutations that have not been identified yet. Caryn

JoanQuilts

2FriedEggs - you might want to check with your insurance company about the BART testing later this year.  Mine wouldn't pay for BART despite my history and I decided not to have it done.  Then I reconsidered and my onc told me that Medicare had started to reimburse for BART and usually, when Medicare does something, commercial insurance companies start to do it as well.  So I took the plunge and got a notice from Anthem BC/BS that I had been approved.  I had the testing done and it was....negative!

So two primary breast cancers for me nearly 20 years apart and no genetic component that they can identify.  I told my onc I was afraid of what they hadn't yet identified (thinking about my ovaries) and he said he feels that BRCA 1 and 2 are the major risk factors - that if there was something else major out there, it would already have been found.  One man's opinion!

exbrnxgrl

Joan,

The thing that has really driven me crazy about bc is that there are so many unknowns. I realize that this is true of life in general but I guess that when we are facing something so serious we want definitive answers. Oh well, I will just have to have faith in what is known and hope I make good choices based on that. Caryn

2FriedEggs

Joan thanks for the info. I would like to have it just to rule out the Brac for sure. Glad yours was still negative.Yes I think you are right Joan -the doctors all have differing opinions and seem only left to guess at this point. Drives me crazy too Caryn. Seems like there has been so much research yet where are we really in terms of a cure. Sounds like there are promises of a vaccine but who knows.

Fishing around Myriad I found on their brochure: "It is also important to know that while BRCA gene mutations are associated with most hereditary breast and ovarian cancers, there are other genetic causes of these cancers, too. Some are known, some have yet to be discovered."

Ok if there are other genetic causes that are known, why don't our doctors and us aware of them and why aren't there tests?

autism_mom

are you eligible for the testing if your maternal grandmother passed away at 40 from bc. dont know how old she was when dx and can gaurantee my mom never had this test (she is 72 now so im sure she wouldnt bother)