hen I was about 15, my mom started talking to me about breast cancer. Her mother had passed away from the disease at 36, when my mom was 13. So my mom was always raw emotionally about that.
By the time I was 15, she had not developed breast cancer yet. I remember the year she turned 36. I remember the change in her emotionally. She didn't develop it until she was 46 — she passed away at 56 — but at the age of 36, the emotional change in her, it was fear every day.
My mom did not have the option of breast removal like I did. She knew she wanted it done, but physicians wouldn't consider it at the time. Also, insurance companies wouldn't have covered the procedure back then.
Because my mom was always so open with me, when I met my husband I was always so open with him about it. It was always just: We'll get married, we'll have some kids and I'll have my breasts removed. It was always very matter of fact.
I turned 35 last August, and I started having pain in my right breast. My heart just sank. I went straight to my OB/GYN, who had always been with me on having my breasts removed after my kids. She sent me to Dr. Polly Stephens at the Virginia Breast Center at St. Francis Medical Center, who is just the sweetest woman you could ever know.
They did a breast exam and they felt no lump or anything, and the pain had subsided after two days. It was in that meeting that I told them I was considering having a preventative mastectomy — they call it a prophylactic mastectomy. I had brought my family medical tree with me, and Dr. Stephens took a look at that and said, "Yes, let's do it." This was the end of August. Dr. Stephens works with a plastic surgeon named Dr. Neil Zemmel, and I made an appointment for the next day to see him. I showed him my chart and he said, "OK."
I did the double mastectomy and the reconstruction on Nov. 5, all in the same surgery. Because I was so large, they did a breast reduction along with the mastectomy so they could remove extra skin to make me a B cup. Dr. Stephens took all of the tissue out, and then Dr. Zimmel put the silicone implant under the muscle and used my skin to form the breast. They took the nipple and everything with it. We wrestled with the idea of keeping the nipple, but I would still have a 2 percent chance of getting cancer with the tissue in the nipple. In March, I had the nipple reconstruction done.
I explained to my girls — Hannah is 4 1/2, Kate is 3 — what happened. We call them breast parts. Hannah saw me naked when I was changing my bandages, I guess it was four weeks post-op, and she stopped, and she looked really inquisitively, and she said, "Where are your dark spots?" — because I didn't have any nipples. I was like, "Oh, yeah, the doctors took them." And I said, "It's OK, though," and she said, "Oh, OK." At that point, I still had the option of not doing the nipple reconstruction, but I needed to do it because she needs to see me as she sees herself.
The original surgery was hard and involved a long recovery. There was a lot more mental stress than I was prepared for. I felt mentally I was ready for it, but the impact of it really affects you. I haven't ever second-guessed myself, though. It's just a matter of thinking of myself differently.
I don't need to do any breast self exams, which has been liberating. I haven't had to anguish every month. I'm still in the population with everyone else where I still have a 2 percent chance of developing breast cancer because I still have minimal breast tissue and all of my lymph nodes. I didn't have any precancerous cells; they did all of the pathology, so I should be good to go. I was almost positive they were going to come back and say there were precancerous cells.
The BRCA-1 and BRCA-2 gene testing wasn't available for my mom. I want to have it done for my girls because obviously there's a gene; something is going on here. I wish I had had the test done on my mom because if we had done it on her because she had already had breast cancer, then they could have isolated the gene that she had, and so then all they would have to do is test me for that gene. But now I have to go through all of the gene-panel testing to see if they can narrow down which gene I have, and then they can just test the girls.
We talk about this all the time on BeBrightPink.org — a group of previvors (I'm considered a previvor because I'm not a breast-cancer survivor but I'm a pre-breast-cancer survivor): Should parents have their children tested, or should they give the children the option when they're adults? I think I will have the gene testing, and I will be just as open and honest with them about our history as my mom was with me — but leave the decision up to them.
After the surgery, my self-image is great. I felt good about myself. Naked, my breasts are gorgeous. They're high and perky. They look like a 16-year-old's. They're just perfect.