BART testing - worth the cost?

JoanQuilts

I was originally diagnosed with bc at the age of 34, with no prior family history.  My BRCA 1 and 2 test results were negative.  19 years later in December, I was diagnosed with a new primary breast cancer. 

When my BRCA testing was originally done, there was no BART mutation testing.  Apparently, Myriad will do the testing for free if I have a significant family history (which I don't appear to - just a paternal cousin and MAYBE a material great aunt).  My insurance company has refused to pay though I suppose I could try to fight this given my original pre-menopausal diagnosis.

 My surgeon and oncologist think it UNLIKELY that I have this mutation.  Test is $700.  What should I do?  I have two sons and a sister, plus my own ovaries!

Thanks for input!

Joan

Miller1353

That is a tough question, Joan.  I guess if it were me, I would go ahead and do it if it didn't put me into debt. Actually, I would probably take out a loan. Trust me, I detest Myriad Genetics because they have a monopoly and price their tests so that many cannot afford them. I hate to give them one cent more than I have to, but they are the only game in town. All through my treatment, I said that I would do ANYTHING if I thought it would give me an advantage over breast cancer. If you were positive, you could take proactive measures. If you are not, you have the peace of mind knowing that you did all that you could do in terms of genetic testing.  I was BRCA1+ with NO family history. My surgeon and oncologist said that I had 0% probability of a postive result, but I went ahead and tested. My insurance did cover it because I was under 45 years of age at diagnosis. Imagine the shock of being positive. It was the worst and best news. If I had not tested, I would have had a lumpectomy and radiation. I know I would have had cancer again. With the knowledge that I was BRCA1+, I had a mastectomy and hysterectomy.  Being triple negative is also another indicator of a possible BRCA mutation. I think I would test. Best wishes on your decision.

Outfield

Joan, I went ahead and did it.  I have what they call a "truncated" family history.  My dad had very few relatives and several of them died young of things unrelated to cancer.  There was really only him and his brother who lived long enough to have developed breast cancer if they were going to get it.  I have a sister and a daughter, so even though I hate the monopoly Myriad has on the test I went ahead and did it.  Negative, as most women with my history will be, so Myriad is going to make a lot of money diagnosing that one person they have to test 100 like me to find.

Califgirl12

I just had my BRCA test done and my insurance paid for it. I had a half sister whom I never knew or remember ever seeing....that had BC and died last summer. She definitely had BC but didn't die directly from it. Anyways I put the info down on my family history and they went with my word. No one verified anything......I guess it's so common they just went with it.

karen1956

Joan....what would you do different if you had the test and the results were positive?  if they were negative?  I had the BRCA multi-site 3 testing at time of Dx...it was negative....I have 2 daughters and a son.....no sisters....I'm the first to have BC....was Dx at 49 1/2 and peri-menopausal.....I did bilat, chemo, rads, ooph and AI's for 3 1/2 years....there are no other Tx for me to do....As far as my children, protocol at this time is start mammograms 10 years younger than my Dx......I say go with you gut....you'll never be wrong that way....all the best to you

IllinoisNative

It was worth it in my case.  I have a huge family with NO familay history of breast cancer.  I was diagnosed at 36.  Because I was so young, they did the first round of gentic testing for BRCA and it came back negative.  They told me I had less than 1% chance of being positive to the BART test so they didn't seem to think it was necessary.  Um, they were wrong.

I tested postive to the BART test.  And I had zero family history.  I wasn't terribly concerned about having the BART test done because my risk was so low.  However, my insurance paid for it so I figured it was at least peace of mind. Imagine my shock when it was positive.

Not only that, both of my parents tested negative.  They did a paternity test on my dad because the liklihood of him not being my dad was greater than me being a first generation BRCA 2 carrier...lol.  Guess what?  I'm the forth person in history who is first generation BRCA 2 positive.

I'm convinced I'm so rare because not many people get the test if they don't fit the right critera (age, family history, etc).  If more people were tested, I'm sure that statistic would go up.

learnin

Hi Joan

Considering 34 at first dx, two primaries for yourself, a paternal cousin - I think it's a no brainer.

$700 may seem like alot (and don't get me started on Myriad and gene patents grrr) but if it could give one relative then option for prevention or early detection, it would be a worthwhile gift to your family. You have a sister. Maybe there are other cousins. Your sons may have daughters ...

ClaudiaLea

This is so helpful as I had a lump when I was 47 that had a minute fucus of atypical hyperplasia.  My mother died of Ovanian Cancer at age 58 and her sister died of breast cancer at age 55 and another sister of lung cancer at age 67. Another sister developed cancer in her sinuses in her 70's.

I have 4 sisters and no one believed there was a hereditary link in the family until one of my sisters had a daughter diagnosed with Breast cancer last year.  Since that time all 5 of us have had the BRCA2 test for the specific gene mutation that my sister's daughter has and 3 of the 5 have tested positive for that same gene mutation.

Here is the part that bothers me, I tested negative.  I took the Scope mouthwash test in which you swish and spit in a tube and they do the genetic test from the cells in your mouth. While when 3 of my sisters tested positive and I felt that the odds were in my favor that I would be negative, I am a little nervous to tell my children they do not need to be tested. A little nervous about how acurate the test I took was in comparison to the test that uses a blood sample.

Your blog has convinced me to spend the time and money and get the BART test.