Sunday, January 17, 2010

To BRCA test or not to BRCA test?

Editors note: Deb and I started Loop together, but up until now I have done most of the first person blogging. So I am really happy her first article looks at a tough choice many of us have to make.

My oncologist recently referred my to a genetic counselor for a BRCA test. Although I have no family history of breast cancer, she said it is recommended for premenopausal woman who get breast cancer at an early age. I was diagnosed in my early 40s. Breast cancer is most commonly first detected in women in their 60s and 70s.

I struggled with the decision and weighed the pros and cons. Most likely, I would not test positive, but if I did, my treatment would become much more aggressive. Did I really want to know?

I, myself, have no children, but I do have 3 sisters and 3 nieces. If I did have the gene mutation, it would be important for my family members to know that they might have inherited it as well. Although having the BRCA gene does not guarantee a cancer diagnosis in one's future, it increases the likelihood of one occurring. A woman with the BRCA mutation is five times more likely to develop cancer than a woman without the BRCA mutation. 

While researching the test, I learned that laws have been passed to protect people from discrimination who have the BRCA gene mutation. This is a really scary stuff. It makes me think that with genetic testing, we have the potential to become a society as depicted in the sci-fi movie Gattaca. Are we becoming a brave new world? If I had the mutation, would I be branded with a pink BC, making it impossible for me to get a job, health insurance, life insurance, etc.?
I struggled with my decision but finally decided to at least meet with the genetics counselor. I would be given the option to go forward with the blood test (or not) at the end of our talk. In my head, I would do it. It was for my sisters and nieces and for the scientific community. They could have my dna and add it to their collective research. I had it all built up in my mind that I was doing it for the greater good.

It took about an hour to go through my family history. We discussed my ethnic background and built a family tree including my grandparents, parents, aunts, uncles, cousins, siblings, nieces and nephews. We spoke about each person's age and medical conditions. For my grandparents, we spoke about how long they lived and their cause of death. When we were finally finished, she told me that my insurance did not cover the test and that it would cost $3000. I was in shock. Here it was. My answer. So clear, so easy. It all came down to money. I wish she would have mentioned this sooner. Needless to say, I did not have the test.

For a fact sheet on the BRCA test, click here.


  1. Deb, I'm so sorry to hear you were not able to complete the test. Did you at least find it helpful to learn as much as they required about your family history? What I appreciated so much about having to go through that process was learning to ask the right questions from my parents and cousins. Up until that point, the family health history had been vague. Now I strongly feel everyone should have as much health information as they can collect about not only their parents, but their parents' siblings, kids & grandparents. This applies not only to cancer, but stroke, heart disease and other conditions. The more we know about our possible health risks, the more we can be proactive with lifestyle and healthscreenings. Here's a link for information about financial assistance and insurance guidelines for BRCA testing:

  2. I wasn't going to get the test but did it for my sisters' sakes. It also had a secondary use: My Mom was always fearful that she would pass on BC to her daughters (BTW she's an 84 year old, 15 year survivor). She was the first in her family to have BC so it didn't seem to be a genetic thing. Having the piece of paper to show that I did not get it from her (added to the fact that my BC is very different from hers) helped ease her grief.

  3. Here I am, right now in the same boat as Deb, I've just completed the paper work for Gene testing. But the question remains do I or don't I??, well I do my Grandmother and Mother both passed at 67 with BC, and I at 48 have had a mastectomy. I have a daughter and a grandaughter, so now I AM obliged to get tested and see if this dreadful affliction is rampant in me. and if I have passed it on to my nearest and dearest. I'm afraid the cost is nothing compared to the price of possibly saving my love's lives, with preventative. It's my fear that I have already predisposed them to this. Hmmmm!!, I pray not.

  4. I was actually leaning against doing it, until we attended Dr. Cliff Hudis' presentation for the Judges and Lawyer's Breast Cancer Alert.
    It seems the PARP inhibitors work well on BRCA postive patients who have mets. So I am still considering.

  5. Thanks for the link Turban Diva. It turns out that if I was on Medicare, I'd qualify for the test, but my big fancy insurance company does not see me as a candidate. I'm awaiting a written assessment of my BRCA risk based on the family history that I provided. Depending on the results, I will decide whether or not I will fight my insurance company or seek financial assistance.

    Zen, I am so sorry that you find yourself in this situation too. It's so complicated. I pray they will find a cure soon.


  6. My insurance covered my test (sister has ovarian)...but wouldn't pay for a wig. Go figure.

  7. I am a nurse, and I find a lot of the information provided by the makers of the test- Myriad genetic Labs is intended to invoke fear and boost their bottom line profits. The reason that the author of this blog's insurance wouldn't cover the test is because she was not in one of the "high risk" groups. That is why she met with a genetic counselor- to determine her risk. In this day and age of healthcare, we must look at testing and determine the target population. Many studies have been done, and this test only locates certain cancers in specific "genealogy" groups. You must be of a certain descent- because that is the group that has the highest incident rate. So I agree- if you are not in a high risk group- don't waste your money.