My BRCA Story

I’ve always been the kind of person to make a decision, move forward and not look back……….until I finally do. It must be some sort of coping mechanism I formed over time, or a God given gift, because I rarely remember the details of significant events or harp, fret, or worry once a big decision is made.

I said I was going to college the summer after High School (not sure why, but I did) and I have been going to school or working every summer since. I picked a wedding color, which led to a bridesmaid dress, which led to an entire look of a wedding. I just decide and that’s that! Life blows by and I jump in and once I make that decision to jump, I’m in and on to the next life bounce.

Now, I do love details and I love to plan them. But, I just make decisions and can move to the next without looking back. Sometimes, down the road of life, when I do look back, I think , “How did I get here?” And, quickly I realize I got here without much thought into it..

My recent big life experience isn’t that way. I have had to stop everything to really decide some things important. These decisions are complicated. These decisions have risks and rewards. These decisions have a lot of percentages to consider. These decisions affect my body forever and each one I make determines the next. Most importantly, the decisions I make today aren’t just affecting me, they affect others…. my husband and precious kids.

I’ve spent time in prayer, in anger, in denial, in tears, and in thanksgiving. I’ve spent tens of hours researching the internet and learning from doctors, hundred of hours in conversation with my husband, and thousands of hours in my mind and with God. Like my other decisions in my past, I won’t look back. But, this has been a laboring journey for us, and yet a sweet one. The decisions have been made and I’m ready to share.

So, here’s my story. It gets tricky, so pay attention.

About six months ago, I saw a random advertisement while scrolling through Facebook. It was selling Color Genomics (genetic testing) and it tested for heart health, and risks of cancers. It was on sale at the time, and so I bought it as an impulse buy, as Facebook has me easily labeled as “Impulse Buyer!” I bought it with the intentions of encouraging my husband to take one later, as he has heart history in his family. I guess I could have had him do this first test, but he doesn’t work that way. He always lets me go first. So, without any true thought or reason to take it, I took it.

It was a simple test that was mailed to me. I spit in a tube, carefully followed the directions, and mailed it back. I received the results by a genetic counselor phone call about two months later, in December. The phone conversation was a mixture of thorough information and thorough confusion, because all I wanted to do was get off the phone and google BRCA2 mutation. I was clueless to how any of this worked, and I am sure I sounded silly on the phone asking her how she knew this! But, she explained it was from my DNA and she encouraged me to reach out to my doctors and encouraged my family to be tested.

She told me it was rare- 1 out of 400 in the US. BRCA is apart of only 10% of all Breast Cancers, I scribbled down, but those with it have a high risk of being in that 10%.

She discussed my risks for breast cancer, ovarian cancer, pancreatic cancer and melanoma cancer. Again, I was really just wanting to get off the phone with this nice lady to tell my husband and start my own research. I’m not sure anything really sunk in.

Later, (two clicks with Dr. Google) and I found that what she said was all true. I reached out to my doctors and sent those online results. Over a course of weeks, they sent me to Texas Oncology, which did a blood test to confirm I was positive for BRCA2 mutation and connected me with a genetic counselor and oncologist. During this time, I also learned.

I reached out to my biological father’s side. My aunt had breast cancer twice in her 50’s and two different kinds-Triple Negative and Hormone Positive. She was tested and has the BRCA2 mutation. Her daughter also has the BRCA2 mutation (my first cousin) and she had undergone a prophylactic double mastectomy and hysterectomy. My grandfather died of Pancreatic Cancer and his sister died of Breast Cancer that metastasized to the brain. It is clear by all my genetic specialists that my BRCA2 mutation came from my paternal side.

My aunt has been a true angel for me. It’s funny how all my previous health charts said “no cancer history” yet it was there my entire life. I had always said “No history of family breast cancer!” I just didn’t know, because I have been estranged from that side of my life. It’s sad to start filling in paperwork for the doctors and half of your family tree are complete strangers, representing half of who you are. Yet, these strangers truly can determine your destiny.

It’s been a blessing to get close with my aunt and for her not be a stranger anymore. It’s been a true gift to learn of her character, love, and strength and to be given these life changing conversations (through text and Facebook) with her. She has helped me more than she knows. We have so much common ground, besides this genetic mutation.

So, what is a BRCA gene mutation ? It is the Angelina Jolie thing! But, what exactly is it? Everyone has the BRCA1 and BRCA2 genes – what I have is a mutation in this gene that I was born with. This particular mutation was discovered around 1994 and is linked to particular cancers. These genes help repair DNA breaks that lead to cancer and forming tumors. If your gene is mutated you have a much higher percentage of getting cancer. You can form tumors more easily in those areas. For BRCA2 mutation, it’s breast, ovarian, pancreatic, and melanoma. The gene doesn’t skip generations, therefore I had 50% chance of getting it. My three children will be tested, when they are around 25, because they each have a 50% chance of having it.

After it was concluded by bloodwork that I did, in-fact, have it….that my little spit Color genome test was correct, I was sent for a breast MRI. It was MISERABLE! This was the week my son was going to the Regional basketball tournament and I remember telling them to give me the results on Monday, because I knew I needed that fun weekend! I will probably write an entire blog over that MRI one day. But, praise God the results were all clear! Next, I was sent to MD Anderson.

We have traveled the roads now five times to Houston… and still have many more trips ahead of us. My husband has been with me for it all. He has asked the questions when I forgot them. He has been with me for every exam, scan, sonogram, and blood draw (yet, he did miss the MRI and his sisters will tell you about it). We would leave one specialist (Breast) with percentages and go to the next (Ovarian) with percentages, and then meet with BRCA research studies teams. Our minds were blown! I had one doctor say, “You will never look that good again,” and we left there and my husband said we won’t being going back there, not because he expects me to look the same, but because he knew the attitude was heartbreaking. He was quiet when he needed to be and loud when he needed to be. He was funny so many times. He has handed me tissue and held my hand and shown me more love than I ever knew he could.

The time we have spent together has been priceless. He made my loneliness turn into something beautiful. God gave me Dustin in just the perfect ways . He helped me make this big decision slower and clearer. We have learned so much together about BRCA, and we worked together as a team to find the perfect doctors that God has planned for me.

My first appointment was with a breast surgeon. She explained that this is all my choice. I could do nothing and they would watch me like a hawk. I would have a mammogram/MRI every 6 months forever. FOREVER!!! And remember I had a horrible experience the first time. She said every image would be checked and I could easily turn into a pin cushion being biopsied. She said I could show no signs in an MRI and because of BRCA mutation I could be stage 3 in six months with breast cancer. My husband asked, “What would you do?” And she told us without a doubt she would have the prophylactic double mastectomy. The surgery would reduce my chances of breast cancer from 87% to 2%. She also encouraged me to take my time and decide over the next few months. But, she made it clear that every choice is mine. It’s my life, some walk away and never think about it again. No tests! No thoughts! That’s their way and whatever way is fine. I liked that about her. But, this decision had to be my way.

The MD Anderson and Texas Oncology information for BRCA2 that I received were the same. My positive test for the BRCA2 mutation moved me from 6-12% to 87% for the likelihood of being diagnosed with Breast Cancer sometime in my lifetime. And, my risk for Ovarian cancer moved from 1-2% up to 44% with my positive result. These were the percentages discussed. So many percentages!

The next appointment was with a gynecological oncologist. There is no proven screening for Ovarian cancer…. no blood work, no sonogram, nothing to screen and see. Therefore, removing the ovaries and fallopian tubes is the suggestion for someone my age done having kids. Honestly, I couldn’t have found out this news at a better time. If I had known earlier, we probably still would have waited until now.

My decision has been made to have a number of surgeries… starting with the double mastectomy at the end of the summer.

I’m not writing for sympathy or concern. I’m praising God that I am cancer free and I learned this when I did. I’m fine. There are bigger issues than mine to be worried about.

I’m not writing to encourage you to get tested for the BRCA mutations, unless you have Breast, Ovarian, and Pancreatic Cancers in your family… it is rare.

I am writing this for me…to go back to, after my surgery……..to remind myself. I am making this choice to be proactive, because I would never want to tell my three kids I knew all of this…. I had all of this knowledge…I had this chance…and I didn’t use it.

I want to do whatever I can to keep from telling my three kids and husband, “I have cancer.”

Regardless of any set backs it causes, telling my family THAT would be much worse for me than anything I may have to go through.

Many people have said to me, “I wouldn’t want to know that.” And, I am the first to understand that, because my brain and heart have been on overload since December (I am pretty sure my husband will not be getting that heart health screening, because he wouldn’t want to know these things, either). There are so many times that I wish I didn’t know all of this. BUT, I DO!

For some reason, some bigger reason than I understand, I randomly ordered a test thinking about my husband from an advertisement on heart health. And, now I have had to stop and think about big stuff and dig deep to what is best and what I really want. Now, I’ve gotten closer to my estranged aunt in a way some may never understand. And now, I walk this marriage journey along side my husband with eyes, ears, and a touch like I’ve never had before. Our relationship has transformed, much like my body will, and for that I am forever grateful. God has a way of showing us our true blessings, bringing us closer to Him, and making us see our lives in a clearer lens.

I have learned through this that I may have a mutated gene, but I also have a mind that is strong and heart that is full.

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