With all the whirlwind media lately surrounding
Angelina Jolie's decision for a bilateral mastectomy I thought I'd share a lil bit about being BRCA positive. It's been over a year-and-a-half since
I found out I was BRCA2 positive and I realized I haven't talked much about it on my blog.
For the record, no one in my family, immediate or extended, has ever had breast cancer or any type of cancer for that matter. This was the main reason no one suspected that my lump was actually cancer. Once I was in fact diagnosed, at the age of 28, the first test they ran was the BRCA test. Less than 20% of breast cancers are genetically linked to the BRCA mutation, but typically when a young woman is diagnosed it's often because of BRCA. I remember my oncologist saying to me "If you come back positive, I'm betting it'll be BRCA2". Sure enough, I was.
Everyone is born with the BRCA gene in their genetic makeup. Less than 1% of the population has a mutation on the BRCA1 or BRCA2 (yay me, awesome odds!). This mutation causes a malfunction in tumor suppression, thus allowing tumors - mainly in the breast & ovaries - to grow. I had no reason to think that I had this mutation until I was diagnosed. Many young women are now proactively being tested because of a family member having cancer, and they are opting for preventative surgeries. I've found an awesome group of women, called
Young Previvors, who provide an excellent source of support for BRCA+ young people.
I've been humbled to have several friends come forward and talk to me about their family cancer history and get tested for the BRCA gene themselves. I cannot even tell you how happy this makes me that they're taking their health into their own hands. It is so important to know your family history and make wise choices regarding your future health.
There is a process called
PGD where you can elective to have your embryos screened for a variety of genetic diseases and mutations. Many people who are BRCA+ choose to have this done so they do not pass on the mutation to their children. While this is an amazing option for many people, we feel like this is not something we will do for any future children we may be blessed with. Our daughter may or may not have this mutation, we won't know until she's 18, but she did not get a choice in her genetic makeup. To us it would not be fair to genetically screen any other children we may have-- they all deserve the same chance at life. When I brought this up with our daughter's pediatrician, his reply was "There's now a vaccine for cervical cancer, I'm sure by the time she's old enough there will be a vaccine against BRCA". I was so relieved; what great optimism to have! When our own daughter does get tested for the mutation, I will fully
support any decision she decides to make to prevent herself from getting
cancer should she carry the same mutation that I do.
The largest hereditary cancer organization for BRCA+ information/support for YOUNG women is
Bright Pink which was started by Lindsay Avner, 22yr old woman who elected for a preventative mastectomy. It is such an amazing organization and I love all of the awesome information and support that they offer. There is also another national group called
FORCE who offer valuable resources and research about BRCA. They are actually helping members of my own immediate family to get testing. They've also recently partnered with the
Basser Institute, the first and only research center for the BRCA mutation. I've spoken to the director of the Basser Institute for advice on my own diagnosis and they are truly doing awesome ground-breaking work there.
So the bottom line is know your family's history, and if you don't know, ask! And if I can answer any question for you too, please ask me! I'd love to help in any way I can.