Monday, May 16, 2011

Deciphering BRCA negative...just what does it mean for you?

I have FIVE women in my family (myself, my sister, and three cousins) that are/have been breast cancer patients, and all of us are BRCA negative. For the longest time I've thought, "Surely this gene is in my family". Surely, I must be right. I researched BRCA and decided to share with you what I found because I believe everyone should understand the results.
A negative BRCA test result means that you do not have a detectable mutation (gene) in BRCA1 or BRCA2. Sometimes, there is a known BRCA mutation in other family members, and it is referred to as a ‘true negative’. This means the gene causing the cancer in your family has been identified and you do not carry the same mutation. What does it mean to you? It only means that your negative result reflects it is unlikely that you carry a BRCA1/2 mutation.
Statistics show that approximately 12% of all high-risk people have a BRCA1/2 mutation that is not identified yet, so it’s missed by the test. Genetic testing is not yet perfect and current techniques cannot “read” the gene/DNA completely.
It is also possible that you are not the right person in the family to have this test, so if you tested negative it may be necessary to look at your family and determine whether it might be more appropriate to test someone else. Both myself and my sister have taken this test and we are negative yet we are both triple negative breast cancer survivors.
On the other end of this is the question, what doesn’t the negative test result mean?
It doesn’t mean you don’t have a gene mutation. You could still be at an increased risk for cancer because you might actually have a BRCA1/2 mutation, it just hasn’t been identified yet. Also, the negative test result does not mean that you cannot get cancer. And it doesn't mean you can stop visiting your doctor. You should continue to follow up with your specialists and take your health seriously.
When I had my test, I considered it to be a preemptive strike against my cancer. If I had/or didn’t have the mutation, at least I was aware of the results and could move forward in an educated manner. I will not take this cancer lying down…unless I have just awakened from another surgery……I will become as educated as possible, from reputable doctors and hospitals that I trust.
Genetic testing is getting better and better each day and the medical community is making leaps and bounds strides against breast cancer. BRCA is the current test, and hopefully one day soon, a more predictable accurate test will be available that can identify every mutant gene. Until then, stay educated and know your body and your disease. Hugs.


  1. Arla,

    we found your blog and are inspired by your story. Wanted to thank you for sharing this with us and to let you know that we have added your blog to blogroll. It can be found on our home page footer and within the pages of our own blog. Keep writing - your bravery is truly inspiring!


    The Breast Cancer Discovery Staff

  2. Hi Arla,

    Thanks for writing more about BRCA. I too tested negative but the geneticist believe it's likely that I have some gene/cancer marker that has yet to be identified.
    I signed up for and agreed to be part of a study to continue to search for other genes that may link to breast cancer - anything to help others!