Spirit Lead Me

I found my BRCA gene at 27.

I never planned on getting genetic testing. I didn’t have any suspicion that I was carrying a gene that could potentially kill me. I didn’t know much about my family history.

I was 14 when I got put into foster care. I knew nothing of my father's family history. My mother’s side of the family had seen cancer and death, but when they all die from drugs and alcohol you never question if genes played a role.

At the age of 18 I accepted Jesus as my Savior. I fell in love and got Married at 19. With God by my side and a husband who loved me fiercely, I thought life would be perfect.

At twenty-six and three kids later, we moved across the country. My youngest son was faced with brain surgery. Six brain surgeries later, multiple conditions unanswered, he was diagnosed with a very rare skin condition: Ichthyosis. After a year of complications his team of doctors recommended we meet with Genetics, put a puzzle together of his brain conditions and see if anything Genetics could find would make the puzzle whole.

The way to approaching genetics in a child is simple: test him and mom and dad. Run his whole DNA genome. If anything comes up positive, then they run our DNA along side Lincoln’s.

BRCA 2. My little Lincoln had BRCA 2. From me. That meant he had a risk of male breast cancer, pancreatic cancer and skin cancer. He would have to have screenings done when he turned 25.

I have two other children who have a 50% chance of having BRCA 2. If they would like to get tested at 18, then that will be up to them. My heart tends to ache thinking of my daughter going through what I have endured this last year, if she does in fact have the gene, I get to say me, too.

It’s a bit more complicated as a female testing positivefor the BRCA gene. There are 2 BRCA genes. BRCA 1 and BRCA 2. Specific inherited mutations in BRCA1 and BRCA2 increase the risk of female breast and ovarian cancers. People who have inherited mutations in BRCA1 and BRCA2 tend to develop breast and ovarian cancers at younger ages than people who do not have these mutations.

A BRCA1 or BRCA2 mutation can be inherited from a person’s mother or father. Each child of a parent who carries a mutation in one of these genes has a 50% chance (or 1 chance in 2) of inheriting the mutation.

Because BRCA1 and BRCA2 gene mutations are relatively rare in the general population, most experts agree that mutation testing of individuals who do not have cancer should be performed only when the person’s individual or family history suggests the possible presence of a mutation in BRCA1 or BRCA2.

After multiple doctor appoint ments and screenings recommended for this gene including MRIs, painful biopsies, mammograms and ultrasounds, I was given two options:

1. Continue with this screening multiple times a year while taking a mini chemo pill with massive side effects until the cancer was “caught,” then treat the cancer while it was still in a low stage, or

2. Have a prophylactic double mastectomy and breast reconstruction to bring my risk from 85% of developing cancer to 5%. Spirit Lead me Where My Trust Is Without Borders. I would have never found out about my BRCA gene if it hadn’t have been Lincoln needing his genes tested. Coming from a broken home, in foster care and not knowing any family history, breast cancer never crossed my mind -let alone even doing a self breast exam. Lincoln Saved my Life.

I went ahead with the prophylactic double mastectomy.

I beat cancer before it beat me. I am a Previvor. I Pre Survived breast cancer. A surgery every three months (due to complications) for the last year has not been easy. The pain of a mastectomy is unimaginable. Doing this with three young children often has me screaming out, “Why me?”

But to be here with my children, to see my daughter someday walk down the aisle. To watch my boys play sports and graduate, to love my husband until we are old. It’s all worth it.

Spirit Lead Me Where My Trust Is Without Borders.

I wish I could say I’m near the end of the tunnel, that I can see the light on the other side, but for me and my BRCA journey I’m only halfway there. My next preventive surgery will be my ovaries. Ovarian cancer is the silent, deadly cancer. My surgeon said it’s not a matter of “If I get them removed, it’s a matter of WHEN.”

Even though I can’t see the light, even though I can’t see God, I can feel the light; I can feel Him.

I BEAT CANCER BEFORE IT BEAT ME.

As of right now I’m not sure how many more breast surgeries I will need in the future, but in the next five years I will need to get my ovaries removed. It’s not the prognosis I was hoping for when we started the search for answers for Lincoln, but it will hopefully save my life so that I can spend more of it with my family.

If you have any family history of breast cancer or ovarian cancer, I highly recommend you speaking with your doctors about getting your genes tested for the BRCA gene. I also encourage you to practice self breast exams. My motto is “Feel them on the First.” It’s my favorite way of reminding myself to do a self breast exam. I still check because I have a 5% chance of developing cancer. I will do anything possible to save my own life so that I can live it with those I love.

by Kaysie Berry