Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree

by Lizzie Stark

  My mom’s search for a plastic surgeon followed a similar trajectory to my own search. The first guy she went to “said that he wouldn’t do the reconstructive surgery on me,” she says. “He said that all my energy was going into fighting the cancer and that, if he did reconstruction on me, I would just get cancer again.” When she left the hospital she was crying so hard that the parking attendant asked her whether she was sure she could drive. As my mother learned when she brought up the conversation with her oncologist, that plastic surgeon was wrong about reconstruction driving cancer recurrence. Her doctor let her know about a top reconstructive surgeon in Atlanta named John Bostwick III. This was in 1983, long before Internet searches made research so easy, so my mother travelled to the local medical school and looked up this Bostwick character in the library, read some of his papers, and read medical texts about the procedure. Then she traveled to Atlanta for the day and interviewed him. He worked, as many surgeons then did and still do, in several stages. After the implant process, three months later she’d have to return for nipple reconstruction with darker skin from the groin area. “Lordy, I never thought I’d be writing about this with such casualness,” my mother e-mailed me just before our visit. My mother’s reconstructive surgery was more complex than mine would be because she had radiation damage from the cancer treatment. On the side where she had a prophylactic mastectomy, her implant is placed below her pectoral muscle. On the other side, Bostwick tunneled one of her back muscles under her skin to make a pocket to hold it.

  The decision to have reconstructive surgery had come easily. “I had worn the prosthetics for the year,” she says. “And they’re hot, and they feel heavy; they don’t feel like a part of you. I was going to the gym and stuff like that, and I didn’t want to wear them to the gym; and I thought, well, why should I have to do without this if it can work for me?” The reconstructive surgery also helped her recover after the mastectomy, which had been “a sexual loss. There’s no doubt about it. As I recovered from the surgery and the treatment from cancer, I was also able to recover a sense of sexuality and femininity, and I was able to feel beautiful. That was one of the pleasures of having the reconstruction,” she says. “I felt … not whole … and not ‘beautiful’—that wasn’t exactly it either,” rather, she felt like herself again. “And I had that shape back that I was used to, and it felt like a part of me, part of the total me, not the physical me.”

  One sadness for my mother during her cancer was that she wasn’t able to connect with her mother over their shared experience, in part because she opted to deal with the illness privately, with my father, and in part because my grandmother sometimes got wrapped up in her own experience. She told my mother that she hadn’t needed reconstructive surgery to feel good about herself and didn’t encourage the operation, which hurt my mother deeply. It was only decades later that my mom would come to understand that reconstruction hadn’t been an option for Meg due to the extreme nature of the mastectomies and radiation she had endured. Meg’s disapproval may have stemmed from her own disappointment. Perhaps she found it easier to deal with the reality of her unreconstructable chest if she convinced herself she wouldn’t have wanted reconstruction anyway.

  This was why I wanted my mother with me at these appointments: even before we met the surgeons, based on accounts I had read on the FORCE boards, I thought they might be the guys. With her experience, she would be an amazing second pair of ears and would ask good questions.

  Aside from that, she is my mother. She would walk into a burning building for me. She would take a genetic test for me. And if it were possible, she’d have this mastectomy for me. Though we talked often on the phone and via e-mail, I could tell that she had been holding back, trying to give me space to deal with my own emotions and make my own decision, trying not to crowd me with her baggage. But I wanted my mother here. It would be good for both of us, I thought, for me to be able to feel her love up close and for her to feel permitted to love me during this tough time. It can be difficult to let other people help you, to let the people who love you see you weak and in need of support.

  When we arrived at the office of surgical oncologist Dr. Andrew Ashikari after our two-hour drive, we discovered that I wasn’t in the appointment book there, or over at the office of the plastic surgeon, Dr. C. Andrew Salzberg, either. Perhaps there had been a mix-up with these two doctors, or perhaps, clouded by emotion, I had only imagined that I’d made an appointment on that day. In a move that would further endear these doctors to us, the receptionist managed to find a slot for us later in the afternoon and even called ahead to Salzberg, who was able to see us about forty minutes later.

  Salzberg’s office was in a clean modern building that resembled an obsidian box. The interior was tidy and new and painted in neutral golden colors. It felt like we were not in an office so much as in a day spa. The receptionist escorted us to a small room containing a large wooden desk with two armchairs across from it and offered us tea.

  Dr. Salzberg, when he entered, reminded me of Captain James T. Kirk of the USS Enterprise. With his light brown hair, blue eyes, and sloping shoulders, he resembled a middle-aged William Shatner and had an easy, comfortable intimacy with us even though we had just met. He sat behind the desk as if he were in no rush and explained direct-to-implant surgery to us while we sipped our tea. We already knew most of the details because the receptionist had put on a short film for us, projected onto the wall behind the desk, while we waited for him. Essentially, after the breasts had been removed through an incision in the inframammary fold, the surgeon lifted up your pectoral muscles and inserted implants beneath them. The muscle covered the top part of the implant, and to hold the lower part of the implant and provide coverage, Salzberg inserted a sling made of AlloDerm, which was a synthetic collagen matrix. What in tarnation is that? I asked. It was essentially donated tissue, harvested from corpses, that had been stripped of DNA and sterilized. As you healed, your own tissue would grow into it, and a few years down the road, if you were to slice off a bit and DNA test it, it’d have your own DNA. Salzberg pioneered the use of AlloDerm to support the underside of the implant—an advancement since the time of Kathy’s similar surgery. This procedure had the advantage of completing reconstruction and mastectomy all in one go. The immediate recovery from the operation took only a few weeks.

  Dr. Salzberg joked that he saw Dr. Ashikari, the surgical oncologist, more often than he saw his wife. The two of them specialized in nipple-sparing surgery for BRCA women and had done hundreds of operations. We paged through a binder of before and after shots of headless naked women. Some had had mastectomies of one or both breasts without reconstruction before they came to him. They were fat and thin, old and young, but afterward their breasts all looked the same: bouncy and preternaturally round, taut and shiny. He pointed out the surgeries he was happy with, and the ones he wasn’t. We looked at shots of capsular contracture, the most common complication of implant surgery. Over time, the capsule of scar tissue the body surrounds foreign objects with can shrink, which makes stricken breasts look weirdly bulbous and taut. Salzberg explained that he believes that AlloDerm helps with capsular contracture because it has a little more give to it than the pectoral muscles that cover the implant through traditional reconstruction with expanders. Of course, he said, he could do traditional expander reconstruction on me if I preferred, though he usually preferred expanders for women with more complex health issues, for example, tissue damage from radiation for cancer. He took some implants out of a box and handed them to my mother and me to touch. I was fascinated by the viscously smooth texture. As I rubbed two sides of the envelope against each other, it felt like some sort of expensive office toy. We were ginger about it too, though, playing with them only for a moment before handing them back, as if it wouldn’t do to seem too interested.

  In the exam room, Salzberg took some measurements of my chest while a nurse watched, and pinched my stomach fat at my behest to confirm that no, I probably did not
have enough for a DIEP flap, unless I was willing to go smaller. I was not. I wanted as little to change about my body as possible, though I had interrogated some women on the FORCE boards, and it seemed like the main regret about this procedure was not going a bit bigger. I would vacillate about this a bit. I had never wished for a larger endowment than nature gave me, but if most women ended up disappointed, well, perhaps I might too. I had no idea how I would respond to having a new body. Salzberg handed me off to an assistant who had me stand topless on a line on the floor while a large 3-D camera mounted on a metal T moved robotically up and down, taking an image of my chest. On the computer she showed me what I would look like after the surgery from various angles, digitally trying out different sizes and shapes of implant. I’ve been in your shoes, she told me. She was thin and tall, young and pretty, with dark hair and a slim-fitting purple dress. From looking, you’d never know that she was also a mutant like me, and that she had had the very same procedure I was contemplating. She looked … perfectly normal. She was not the only former client who worked for Salzberg. The beautiful postsurgical doctor, who worked with patients to help optimize the cosmetic outcome afterward, had also had this same surgery. In my mind, these were powerful endorsements. I liked Salzberg’s no-pressure attitude, his willingness to show us his mistakes, and his bedside manner. I was surprised how much the latter meant to me—surgeons see lots of patients, and it can become routine, I suspect. But for each patient the experience of surgery can be traumatic and upsetting—I liked that he had not slipped into routine.

  Though it had been informative, this visit had not been easy. We would be seeing Ashikari, the surgical oncologist, a few hours later. My mother and I decided on Mexican food, followed up by ice cream in the quaint local town. We both liked Salzberg—his William Shatner-ness and the confidence he projected, how he had explained the procedure to us and answered all of our questions without condescending. Perhaps in comparing him to Shatner, I’m retelling the old story about plastic surgery, making him into the hero and me into the silent, passed-out damsel. But it felt like such a relief to find someone who seemed both kind and competent. And more than anything, we liked the tea his assistant had served. It was just the thing, we said over and over again, using different words, to calm down two people in the throes of surgical emotion.

  Ashikari’s office didn’t feel as posh as Salzberg’s, but it was busier, in part because Ashikari treated cancer patients as well as otherwise healthy BRCA patients, and there’s an urgency to cancer treatment that there’s not to, say, using ultrasound to tighten and tone loose facial skin. The office, where he practices with his father, who is a renowned oncologist, has nearly ten thousand active patients, who need care and follow-up during the long road of cancer treatments. In an unassuming spot on one wall, I read a framed poem, apparently written by one of the Ashikaris’ patients, in which she prays to God while suffering from cancer, and then looks up from her bed to see his presence in Ashikari smiling down at her. It wasn’t Audre Lorde—it rhymed “Ashikari” with “see”—and was neatly handwritten, presumably by the writer, a clearly heartfelt testament to the tremendous faith one patient had in the medical care provided by this office.

  Dr. Ashikari was tall and thin, with a long, narrow face and dark hair—the perfect Spock to Salzberg’s Kirk. And as it turned out, though he was a nerd’s nerd when it came to the science of surgery, he also had the cordial social graces of a debutante. He saw us in his office, behind a large desk that was covered with stacks of medical papers he was clearly in the process of reading. Although his receptionist had shoehorned us in, he treated us as if we were his only patients and gave us thorough, unrushed answers to every question. He talked about the papers on nipple sparing that he and Salzberg were coauthoring.

  By 2013, a few years after I saw them, he and Salzberg had performed 417 nipple-sparing prophylactic mastectomies, more than any other single practice in the country, making Ashikari, according to his bio on the Ashikari Breast Center website, the world’s foremost expert. About two-thirds of those 417 women were positive for a BRCA mutation, while the rest had made decisions based on other risk factors; some were cancer patients who only had a prophylactic mastectomy in one breast. As of the beginning of 2014, Ashikari told me, only one of those patients had developed cancer, a woman with a strong family history but not a BRCA mutation. After the mastectomy, the pathologist had found atypical tissue spread throughout both breasts. We talked about AlloDerm and how Ashikari and Salzberg had tried out operations in a few patients using a collagen matrix made from pigskin but found that in one of them, the pigskin liquefied, requiring the removal of the implants. I sat, feeling queasy about liquefied pigskin inside some poor woman’s breasts and happy that I would be using something else. He referenced the latest studies and periodically looked them up on his computer when he was in doubt. Clearly, he viewed his profession as a living thing that he watered with frequent study.

  He talked about how sometimes women came to him wanting, essentially, a free boob job from their insurance, and how he treated these women with skepticism because it wasn’t a boob job. It was also a mastectomy. He thought I was the sort of person who had accepted the reality of the situation, and he was not worried about me, he said. I felt proud that I seemed like a person who was dealing with this rather than falling apart, but I also dreaded being ready for the surgery.

  Although this surgery had a cosmetic angle—I didn’t think I’d be able to cut off my breasts if I weren’t getting new ones—really, the mastectomy was the crucial piece for cancer reduction. Dr. Ashikari explained that inside the operating room, his main goal was keeping me healthy by removing as much breast tissue as possible. Dr. Salzberg would sit in on the whole surgery, watching Ashikari make the initial incisions, and commenting. If Ashikari could help the cosmetic outcome by making the initial cuts a little to the left, then he would. But, he said, he would not compromise my health. If Salzberg said, “Can you make the cuts a little smaller?” and Ashikari needed them bigger in order to remove all of the breast tissue, then he would make them a little bigger. If Salzberg wanted him to take a little less tissue to make the skin flap thicker to make the cosmetic result better, Ashikari wouldn’t do it. Inside the OR, he would be the cancer doctor, removing as much breast tissue as he could. As he told me, “My judgment for a prophylactic mastectomy versus a mastectomy for cancer is really the same. I’m not going to sacrifice the quality of the surgery.”

  As for my nipples, he said, they would slice off a little from the underside of the nipple and biopsy it on the spot. If it was negative for cancer, then I could keep them. But if they saw anything suspicious, he would cut them out. Afterward, my dismembered breasts—items I can still hardly bear to think about; I envision them as lumps of soft tissue, like the fibrous inside of a skinned peach, red and dripping with juices—would be sent off and sliced up further and examined for cancer, sacrificed to the gods of science. Some of the women he had operated on, Dr. Ashikari said, even women my age, learned that they already had nascent cancer inside their breasts. Later, he tells me that the literature estimates this rate at about 5 percent, and his numbers are roughly in line with that, though a bit lower—15 of his 417 patients have had this happen. The thought chills me.

  Afterward, on the long drive back from Tarrytown, New York, to Edison, New Jersey, my mother and I dissected the visit. As a young nonsmoker with elastic skin and round breasts, I was a good candidate for this particular type of procedure. I liked the idea of waking up with reconstruction complete—of never having to see myself with a flat chest, as I would during traditional expander surgery, and of finishing up in one single go. Psychologically, I thought it would make things easier. Both of these surgeons had performed scores of nipple-sparing operations, mostly successful. At the appointment, Ashikari had told me that more than half of his patients maintained some feeling in one of their nipples, but that he was still trying to translate that number into hard scientific data.
(Later, he tells me that about 70 percent of the patients who respond to his postsurgical questionnaire say they have some nipple sensation, but that since those are self-selected, he’d say the number is more like 50 percent.) He also pointed out that there are different sorts of sensation. Most patients seemed to respond to dull sensation—envision pushing on a nipple with a pencil eraser—not sharp sensation, delicate enough to detect a pin. So patients do not regain total feeling, he said, but some. And since the alternative option of nipple removal presented a 100 percent chance of losing all nipple sensation, I found the procedure attractive. My mother felt the importance of all this, of course, but she’d also liked how the doctors had talked to us. “I think I was relieved to see the people that would be working on your case and that they treated you with respect and that they gave you the information,” she tells me years later. “It was hard to see you go to this appointment, and I think I probably held a lot of it in because I wanted to be strong for you and just be matter of fact.”