- Posted October 10, 2012 by
This iReport is part of an assignment:
Tested for the breast cancer gene?
The Most Difficult Decision
One day not long after my 30th birthday my aunt called me and said “you do know I tested positive for the breast and ovarian cancer gene don’t you? You need to talk with your Dr. about it.” Coincidentally I had an appointment with my OBGYN the next week. I brought it up to her. She was adamant that I get tested and immediately wrote me a prescription for a breast MRI and told me where to go to have the genetic testing done. I had the MRI right away, and I knew I wanted to do the genetic testing, but my mom hadn’t been tested. My mom said she was going to be tested and if she was negative there was no way I could be positive so I waited for her to do it. Time passed. The testing was always in the back of my mind. My doctor nagged me about it every six months when I saw her. “My mom said she was going to be tested” I would tell her. I told her this for almost a year and a half, until, my mom was diagnosed with stage 2 ovarian cancer. It was only then that she was tested, and low and behold she was positive. My sisters and I were there for her during the next eight months when she went through her surgery and six months of chemotherapy. Eventually she was declared to be in remission. Now it was my turn to test, except that my husband and I wanted one more baby. In January 2012 three months after I had my third child I was finally tested. It was eight days later that my doctor called to give me my results. The baby was napping and I was just starting a run on the treadmill when my phone rang. I sat down on my rocking chair and listened while she said the words “I am so sorry, but you tested positive for a mutation of the BRCA 2 gene.” After knowing for almost five years that I was most likely positive I was devastated to actually know for sure.
I began my research at once. What did being BRCA 2 positive really mean? I started by reading a few books and making appointments with countless doctors. What I learned was almost shocking. I knew the statistics going in. The risk of breast cancer for the normal woman is 12.5 percent and her risk of ovarian cancer is 1.4 percent. The risk of breast cancer for a woman that is BRCA 2 positive is somewhere between 75 and 85 percent and her risk of ovarian cancer is almost 50 percent. But, this was almost old news to me. I had known this for years. What was shocking were my options. There were only two options for reducing my risk of ovarian cancer. Surveillance or an oopherectomy. For reducing my risk of breast cancer I was given three basic options. 1) have a risk reducing surgery (AKA prophylactic mastectomy), 2) take a chemotherapy drug that stops your body from producing estrogen and reduces your risk of breast cancer by 50 percent, but also puts you into menopause (no thank you), or 3) surveillance or as I thought of it wait around until you get breast cancer and then have a mastectomy and chemotherapy anyways.
I was sure I was going to go with option number 1. That is until I met with the surgeons. I told my friend on the morning of my first consult appointment. “I’m hoping it is going to be like a glorified boob job.” I couldn’t have been more wrong. After a 3 hour appointment with a breast surgeon and a plastic/breast reconstruction surgeon I walked out numb. The appointment was in Orange county so my husband and I had an hour and a half car ride on the 405 freeway to digest what they said. Phrases like “8 week recovery with no lifting your arms over 90 degrees and no lifting over 5 pounds,” “2 drains on each side,” and “no sensation ever again” kept replaying in my mind. We made it to LAX before I started crying and I didn’t stop for three days. A mastectomy was nothing like a glorified boob job.
What just eight hours before seemed like the only option I was likely to choose now seemed like an impossible decision to make. How was I going to go through an eight week recovery with three kids, the youngest being only 3 moths old. My husband told me “don’t worry about it. We will figure it out if that is what you want to do.” Over the course of the next two weeks I met with several other surgeons and doctors. I tried to learn all about the different techniques used during mastectomies and reconstruction. I learned about skin sparing and nipple sparing mastectomies, lymph node mapping and sentinel node biopsies. I went online and through message boards talked to women all over the country that had had every type of reconstruction possible. I found out first hand about the differences between immediate and delayed reconstruction, DIEP flaps, Lat flaps, and GAP flaps as well as reconstruction using tissue expanders and direct to implant reconstruction. It was a lot of information and it was very confusing and overwhelming. I began to feel a huge weight on my shoulders. I started to feel as if I had been diagnosed with cancer. Having breast cancer was my worst nightmare, and having even the slightest inkling of what it was like was too much for me. I wanted to be out living my life with my husband and children not worrying about cancer 24 hours a day. So, after many many hours of agonizing I decided to go ahead with a bilateral prophylactic mastectomy with lymph node mapping and sentinel node biopsy with immediate reconstruction and tissue expanders.
On March 12th, 2012 I had my surgery. I awoke after the eight hour surgery in a lot of pain, but extremely relieved. I could say with almost certainty that I would never have breast cancer. The burden had been lifted. I still had a long way to go, but I was on the road to recovery. The road turned out to have lots of bumps, and twists and turns, but no matter what happened I was always comforted by the fact that I didn’t have breast cancer. I find it fitting that this month, which is breast cancer awareness month, I will have what is known as my exchange surgery. During this surgery they will take out the tissue expanders which were put in during the original surgery and put in my permanent implants. I am still far from finished with this process, but I can see the light. When I am finished with this chapter I still have to deal with my risk of ovarian cancer. It looks like as a 40th birthday present I will get an oopherectomy, but that’s still years away. Until then I am comfortable choosing surveillance.
I could not have gone through this process without the love and support of so many of my family and friends. Unexpectedly, I also made several new friends along the way who were crucial in my recovery, from my doctors and the nurses at Breastlink of Orange to all of the amazing strong women I have met through FORCE. Thank you to each and every one of you for everything. During this month of awareness learn your risk for breast cancer. It just may save your life.