BRCA JOURNAL: CHAPTER THREE

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

After testing positive for the BRCA gene and meeting with several doctors, I began to consider prophylactic surgeries.

First I saw Dr. Beth Karlan, director of the Women’s Cancer Research Institute at UCLA. She repeated the same sentiment as my doctors in Chicago–that whether or not I had a mastectomy, I should have my ovaries removed to prevent ovarian cancer. Dr. Karlan knew my family history, the types of screenings I had had and the amount of time I had spent researching my prophylactic options. She summed it up in these words: “Honey, you know the expression 'shit or get off the pot'? Well, it’s time.”

Dr. Karlan recommended that I have a full hysterectomy instead of just removing my ovaries. I asked her why, and she told me that many times, BRCA patients who get ovarian cancer develop it in the fallopian tubes. If I were to have my ovaries removed, the doctor would also remove my fallopian tubes, but there is a portion that extends into the uterus and cannot be removed, leaving me at risk. She also said that I would be able to take estrogen-only hormone replacement therapy which is often more effective at easing the symptoms of menopause than estrogen and progesterone hormone replacement therapy (women with a uterus must take progesterone in addition to estrogen because of an increased risk of uterine cancer). Furthermore, she examined me and determined that I could have the hysterectomy done laparoscopically, which would mean that the surgery and immediate recovery would be just a few days longer than if I had just had my ovaries removed—nowhere as grueling as a traditional open hysterectomy.

It appeared there was no avoiding it–I would have a hysterectomy and would just have to deal with the symptoms of menopause. I asked Dr. Karlan whether she felt it would be overkill if I had a mastectomy in addition to the hysterectomy. She shook her head and simply stated, “No.” Then she told me a story about a close friend of hers with breast cancer. She told me that despite the fact that they caught her friend’s cancer early and were able to treat it and put it in remission, it took a huge emotional toll on the woman and her marriage. It was not unlike the stories I have heard from other people I know who have survived cancer. They all say it’s the little things that cause anxiety–a pulled muscle, a pain in the back. They all wonder, did they just overdo it, or is the cancer back?

Dr. Karlan spent some time talking to me about prophylactic mastectomies and reconstruction and told me that while not all results are the same, she has seen some beautiful breasts following reconstruction.

I told her that during the course of my research, I had learned that I could have a nipple-sparing mastectomy, where the doctor can preserve the woman’s skin, nipples and areola so that the look is more natural when reconstructed. Dr. Karlan recommended against having a nipple-sparing mastectomy because a significant risk of developing breast cancer would remain after that type of surgery.

I was inspired by Dr. Karlan but still unsure of myself. While I had thought I wanted a mastectomy to avoid going into menopause, it didn’t seem as bright of an option once it appeared I was going to have to face early menopause after all. In truth, I was still scared to death of having one, and my doubts only multiplied as I learned more about the complexity of the surgery and the variations in results. I was also very concerned about how my breasts would look following the surgery. As one of my doctors put it, there is more to breasts than meets the eye: “They play a functional role, sure, but there is a more emotional element because of their role in a woman’s self-concept and during sex.” If I had had breast cancer, it would be a non-issue for me. I would do anything I had to do to survive, even if it meant removing my breasts, regardless of the results. But since I was healthy, I couldn’t help but worry about how bad the scars would be and how my breasts would look and feel in the end. The plastic surgeon I had originally met with told me that I would have a scar that looked like an upside down omega ( Ω ) across both breasts, and a large scar across the length of my abdomen from where the donor tissue would be taken if I had a DIEP reconstruction. If I didn’t do a nipple-sparing mastectomy, I couldn’t imagine how frighteningly unnatural my breasts would look.

Look At These!