My dear friend, Anne, and I first met at new student orientation when we transferred midyear into Samford (Sam not Stan!) University. Neither of us knew anyone else, and we bonded quickly over the fact neither of us liked our experience at the University of Alabama (Roll Tide anyway, right?)! Fast forward more years than we’d like to admit, and we’re still friends and run into each other on a regular basis. Y’all. Anne is a JEWEL. An absolute jewel. Her huge smile and sense of humor light up any room, and she’s always looking toward the needs of others. Because of that, she’s bravely agreed to share her journey of testing positive for the BRCA1 gene, then subsequently undergoing a preventative double mastectomy, and breast reconstruction.
I’ll let Anne tell you about her journey in her own words:
“I remember the day my doctor called me. The news she proceeded to give me changed my life. She called let me know that I had tested positive for the BRCA1 gene, ‘the cancer gene.’
What Does That Even Mean?
For those women who test positive, it means they have an 80% chance of one day being diagnosed with breast cancer, as well as an increased risk of ovarian cancer.
And Where Do I Go From Here?
My doctor immediately scheduled an appointment for me with a breast care specialist and a gynecological oncologist. First I met with the gynecological oncologist. Because of the gene, he suggested I have a full hysterectomy. My first thought was, “Great, I’ll be thrown into immediate menopause and become even crazier than I already am!!” My doctor assured me I didn’t need a hysterectomy right away: it’s fine to wait as long as I do it before I turn 40, and as long as I stay proactive by coming in for regular exams. At the time I was 35, so thankfully I could wait a few more years for the hysterectomy.
I then met with the breast care specialist. They did a breast MRI to make sure there were no signs of cancer. Thankfully, the MRI came back clear, but I was still positive for the gene, of course, and was given two options:
- Remain proactive and get mammograms every 6 months, or
- Undergo a prophylactic double mastectomy.
I decided I no longer wanted to live with the anxiety of being diagnosed with breast cancer. You see, both my maternal grandmother and my mother had breast cancer twice, and my sister was diagnosed with breast cancer just weeks after we received the news that we both tested positive for the BRCA1 gene.
For me, and because of my family history, the decision to go ahead with the prophylactic double mastectomy was a no-brainer. And while this path may not be the best option for everyone, after much prayer and family discussion, I knew that this was the path I wanted to take.
The Actual Mastectomy
Along with my mastectomy, I underwent the beginning of the reconstruction surgery. Having just seen first-hand my sister go through her double mastectomy a couple months prior, I felt prepared. From watching her, I thought I knew what to do and how it was going to go. But I came to find out everyone’s experience is different. No one’s surgery and recovery look the exact same. And honestly, I don’t even remember much about the surgery itself. They kept me comfortable – so comfortable, in fact, that I don’t even remember my hospital stay or my first couple of days at home!
Post Surgery
I came home with my chest wrapped in plastic wrap and 2 drains. (Side note: My kids thought the drains were so cool! They were four and six at the time, and we had told them I was having surgery to remove bad germs that could one day make mommy very sick). The first two weeks at home were tough: I was nauseous and discouraged. In the thick of it, I felt I would never feel up to getting out of the house again to see my kids play baseball and soccer. Although I was discouraged, I was also very thankful for a loving and supportive husband and generous family, friends, and church family that really stepped up to take care of us through that season. Prayers, meals, rides for my kids to and from school as well as after-school activities were all provided. And after about two weeks, I felt much better. The thought of never getting out of the house again suddenly disappeared, and I was ready to get back to normal life.
I may have had my drains removed and was able to drive again, but there were still restrictions. I couldn’t lift more than a gallon of milk (which meant I couldn’t hold my children, which made me sad….but on the upside, I couldn’t push a vacuum!! Glass half full, people!) It took about six weeks for a full recovery, and I was finally able to resume a normal routine and return to work.
Reconstruction
After I resumed my normal daily life, I began visiting my plastic surgeon once a week for a “saline fill” to continue the reconstruction process. Once they were filled to my liking, I underwent one more surgery: the final step of my reconstruction. This involved taking out my saline-filled expanders and replacing them with my implants. This surgery was a walk in the park compared to the mastectomy.
The Future
My journey with the BRCA1 gene isn’t over yet: the future still holds a full hysterectomy in the next few years. I’d also like to reiterate this may not be the best option for everyone, but this was the best option for me and my family. I am no longer living with the fear of my next mammogram. I have no regret of the decision I made to get tested and undergoing my surgery. I am so grateful for the medical advances that have been made in my lifetime, and I’m so thankful that I no longer have to be anxious about what my future holds.
P.S. Getting Tested
Genetic testing for the BRCA1 gene can be very expensive, especially if it isn’t covered by your insurance. Because of my family history, I did my test at my gynecologist’s office, and mine it was covered in my policy. If your insurance will not cover it, there are affordable tests out there. I actually also did a self-test through www.color.com to compare results. I simply sent off my saliva in the mail, and www.color.com offered fast turnaround for my results. The results came back exactly the same as the one done by my doctor’s office. Incidentally, a genetic counselor from www.color.com will call you to discuss your results and answer any questions. Because I tested positive, I was able to order tests for other members of my family who wanted to take the test at an extremely discounted rate. If you are interested in getting tested, I highly recommend getting it done–it just may save your life.”
