The new “B words” in my life: BRCA1, Breast Cancer, Biopsy…

I’ve been praying about whether to post this or not, and I feel led to share my story. I’ll explain why later on in this post.
Back in December, I found my maternal birth family, which has been an exciting adventure. While getting to know them, I learned that I have a strong family history of breast cancer. I spoke with my OB-GYN, who encouraged me to get genetic testing, which I did.  The nurse walked me down to the lab, who put me on a phone with a genetic counselor. She explained her concerns about my risk factors and explained what genetic testing involved. I then signed the papers, spit in a tube, and they mailed it off to the genetics lab. A few weeks later, I received a call from the nurse who told me I was positive for the BRCA1 mutation, which puts me at about an 86% risk of having breast cancer and about a 44% chance of ovarian cancer by the age of 70. There is a small study that says my particular mutation may put me at a significantly lower risk, but there are some confounding factors that make me hesitant to cling to those lower numbers.
*PSA: A few nights ago, I paid for the Health section of my 23 & Me report to see if I showed up as positive for BRCA1. I did not. 23 & Me only tests for 3 variants asssociated with the BRCA1 mutation, although there are many variants. This is a very good reminder to proceed cautiously with those commercially available DNA testing products. If you pursue genetic testing due to a strong family history, please talk with your doctor about the most reliable source to get tested, instead of going through a commercial DNA testing site.*
So, I have been faced with a lot of scary information about where to go from here. Salpingo-oophorectomy (removing my Fallopian tubes and ovaries, which will cause early menopause) by age 40 (screening for ovarian cancer is not very reliable), increased frequency of breast cancer screening (alternating mammograms and breast MRI’s every 6 months), possible preventive double mastectomy which would decrease my risk of breast cancer by 90%… Big stuff.
One foot in front of the other.
The first step was a mammogram, which I had last Monday. I expected to receive an “all clear” letter in the mail the following week, but instead, the very next day I received a telephone call from the nurse. (I’ve developed a stress response when I see my GYN’s office number pop up on my phone.) The nurse told me there was a “focal asymmetry” on my left breast that required further testing. *Cue panic.* After a week of waiting and praying and crying and breathing and lots of chocolate and yoga, I had a diagnostic mammogram and an ultrasound yesterday morning. Donald came back with me after the ultrasound, and as the radiologist told me, “There is a solid mass that I’m concerned about.  However, if it’s cancer, you should do well, since it’s very small,” I grabbed Donald’s hands and let my tears flow. They quickly got me in to meet with the breast surgeon about the next steps immediately and in the near future. We talked about the biopsy, MRI’s, a double mastectomy, and meeting with a plastic surgeon to discuss reconstruction options. It was a lot of information. I had a biopsy yesterday afternoon. It sounded like it could have been a cyst, but the surgeon was tentative given my family history and high genetic risk. I should find out the results by Monday.
In the meantime, I am left waiting, clinging to God and his peace that surpasses all understanding. Yesterday, as I waited for my ultrasound, I talked with an elderly woman named Gracie. She was visibly anxious and was praying aloud that our ultrasounds would be negative. I asked her if she’d like me to hold her hand. She nodded. I got up and moved to sit next to her. We spent the next several minutes clasping each other’s hands, huddled together, saying The Lord’s Prayer. She told me about her life, her 9 children, some challenges she has been through. She is a survivor and strong woman, I told her. The ultrasound tech called her back. And after Gracie left, I heard God tell me quietly in my heart, “See? I had a reason for you being here today.” And I felt this inexplicable peace wash over me. It has been stronger at times and has faded to the background at other times, but it has not gone away.
During this whole process, I have prayed that God would make it very clear what I need to do. I told him I need the equivalent of a flashing neon sign telling me, “Do this!” After going through the emotional toll-taking of yesterday and the past few weeks, I am very  certain about what my next steps are. I am going to move forward with a double mastectomy. The choice is a very personal one, and everybody in my position handles the news about being BRCA1 positive differently. For me, the high risk combined with the anxiety and uncertainty make it clear that for my best quality of life, I need to have my breast tissue removed. I know it will be a painful and emotional road to pursue. But to me, it brings me more peace than having to potentially go through this cancer scare every 6 months with my alternating mammograms and MRIs. If the mass is malignant, there may be other things I need to do as well (chemo, radiation, I don’t know…), but I will also choose a double mastectomy over a lumpectomy.
I am sharing this very personal story at a time when things are unresolved for a few reasons:
1) If you have a strong family history of breast cancer, I urge you to talk with your doctor about genetic testing.
2) I wanted to share my story while I am waiting for my biopsy results to show that this new journey of being positive for a genetic mutation is not an easy road. If you choose to get tested, be prepared. I was not. Finding out I had the mutation was scary. I didn’t expect it to be positive, let alone the mammogram or ultrasound to show a mass. I don’t know what tomorrow (or Monday) will bring. I am scared, and I am very thankful that I found out about my high risk of breast cancer. I can be proactive, look breast cancer in the eye, and take control.
3) I crave prayer. So, mighty Prayer Warriors, please pray that God’s will be done in my life, that God continues to give me and my family peace as we go through this process, and that God uses me for His glory no matter what the biopsy says.
Please let me know if you have any questions or would like to talk further about genetic testing, this journey, or anything else.
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”- Philippians 4:6-7

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I'm a Jesus follower, wife, and mom. I have been caught in a Costa Rican riot, once accidentally insulted Gavin DeGraw, and really want to visit Lichtenstein. I love long, romantic walks through the rain forest. I make cakes sometimes. I'm a mess, and I'm learning to embrace that.

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