BRCA JOURNAL: CHAPTER TWO

(Chapter two of five. Read chapter three here.)

Screening

After testing positive for the BRCA gene, I knew that I had to take action to protect myself. I did not hesitate to begin the new screening regimen my doctor recommended and scheduled my first tests almost immediately. In the beginning, I felt empowered; but then the test results came back. None were positive but several were “abnormal,” requiring follow-up tests. Everything wound up being fine, but it was stressful. The mammogram had to be repeated, the MRI had to be repeated, a benign cyst formed on my ovaries the same time I was scheduled for my ultrasound and so that came up abnormal, a spot on my liver showed up on the CT of my pancreas. Everything found wound up to be “nothing,” but it was a stressful way of beginning my life as a BRCA2 patient. I knew that everything was fine, but you can’t help but worry when the whole point of the test is to look for cancer which you know you have an increased risk of developing. I got through those tests as I do all of my tests now: with a sense of resolve and knowing that a little bit of anxiety is well worth the opportunity to catch cancer early so that I have a better chance of surviving if and when it does rear its ugly head.

Preventative measures

On New Years’ Eve 2006, I found out I was pregnant again. During that pregnancy my husband and I began to discuss the option of a prophylactic oophorectomy (removal of my ovaries and fallopian tubes) and when I should have it done. I met with my genetic oncologist and discussed it several times during my regular visits with my OB/GYN. The effects would be great. My oncologist called it “the best bang for your buck” because if I had the surgery, I would almost completely eliminate my risk of ovarian cancer and would also decrease of my risk of breast cancer by about 50%. Going on tamoxifen for five years would decrease my risk of breast cancer by another 45-50%.

My daughter was born on September 4, 2007. Even with the craziness of the birth of a baby and making sure my older two were adjusting to a new year of preschool, almost immediately I began questioning whether I should have my ovaries out. I wasn’t afraid of the surgery -- it is a simple procedure that is done laproscopically -- but once I had my ovaries out, I would immediately go into menopause.

The thought of going into menopause was almost paralyzing. It kept me up at night. I wasn’t worried about hot flashes; I could deal with those. I was most concerned about mood swings and irritability. I have witnessed some pretty intense outbursts from menopausal women I know. And I would not be going through menopause gradually like they had; my menopause would set in immediately and more intensely. I worried that I could really be hurtful to my children and my husband.

Naturally, I discussed my anxiety with my husband. He was very much a part of my decision-making process. As with my pregnancies, we felt like it was our BRCA2 mutation, as it greatly affected us both. However, he admitted that he didn’t understand my anxiety over going into menopause. "Isn’t it something you are going to go through anyway?” he asked. He didn’t get it. It wasn’t his fault, he just didn’t get it. So I discussed my anxiety with my friends. Some thought I would be fine; others, including some who had gone through menopause, urged me to do everything I could to avoid it at such a young age.

One friend suggested that I call her sister-in-law, who, after testing positive for BRCA2, had a prophylactic hysterectomy and mastectomy. Being only a few years older than me, she would be able to talk to me about what it was like to go through sudden menopause. I couldn’t believe what I had just heard. A prophylactic hysterectomy and mastectomy? And she didn’t have cancer? I believe I called her “hardcore.” But she was the only woman I knew who had chosen to remove her ovaries (and then some) prophylactically.

My friend’s sister-in-law was a huge help. She told me the hardest part of the whole experience was the decision-making process, that she went back and forth a million times before she finally made the decision to have her hysterectomy and mastectomy. The day she had her hysterectomy she was put on a low dose anti-depressant known to help menopausal women. She has felt great emotionally and has had very few hot flashes as a result. Like most high-risk women, she hoped to avoid taking hormone replacement therapy because it can increase the risk of developing breast cancer. I had no idea that antidepressants could be used to help with menopause. It was an example of a lesson that I have learned over and over again since then: when I reach out to others who have gone through the process before me, I always learn something new.