Breasts (25 page)

What he does know is that the disease has reformed him from being a self-described swaggering SOB. “I’m not what I was,” said Smith, who after his time in the marines worked for many years in advertising on Madison Avenue. “I was a Mad Man. I was a user of women. I’m not even telling you how many times I was married. I’m not a swinger anymore, not a user. I appreciate women now, and they’re so much stronger than men. I went to support groups, I listened to them. I’ve had the privilege of entering a woman’s world.”

MOST MEN WITH BREAST CANCER, ESPECIALLY THOSE WHO WERE
steeped in a military culture, don’t want to talk about it. Partain, though, is as chatty as a schoolgirl in spring. It’s why he’s such an effective spokesman for his cause. There’s nothing girly about his appearance. He describes himself as “a hairy beasty guy,” and it’s a fair assessment. Not long ago, he convinced Devereaux and a handful of other mastectomized men to pose, topless, in a calendar to benefit breast cancer research.

But underneath his affability runs a deep anger. He is angry that he has breast cancer, angry that the Marine Corps has not done more to apologize to these men or to compensate more of them for their disease. He has vigorously demanded that the Marine Corps turn over more data and notify greater numbers of former residents about the contamination.

As a journalist, I received permission to enter the base and get a tour of its extensive, ongoing $170 million (so far) cleanup mission, which involves everything from oil-eating bacteria to soil-vapor extraction to “pump and treat” stations that oxidize the water’s volatile organic compounds into more harmless molecules. Partain, though, said he is not even allowed aboard Lejeune because of standard security protocols. This makes him madder still. So before my base visit, Partain gave me a different tour of his own. We parked across the street, at a dry-cleaners on Highway 24 a few miles outside of Jacksonville. Many commercial enterprises on this strip are named after themes of patriotism or God. The A-1 Dry Cleaners is up the street from Divine Creations Salon and next to Freedom Furniture. Neatly pressed summer camouflage uniforms hang in a row in the window behind a sign that reads, “NAMETAPES MADE AND SEWN ON. 1 DAY SERVICE.” This spot used to be called ABC Dry Cleaners, and it was, along with Hadnot Point, a major source of TCE and PCE contamination to the base’s water supply.

Partain is a heavy-set man with a goatee and a predilection for aviator sunglasses. He wore shorts and a brown T-shirt that read “Surf City, USA.” The tourist look belied his mood. He pointed across the street to the base, where a chain-link fence and a row of loblolly pines separated the roadway from the base’s family-housing neighborhood called Tarawa Terrace. Next to the entrance gate,
four bright-yellow pole-stubs surrounded a concrete square the size of a dinner plate. That is now-infamous TT26, a well that supplied Tarawa, where Partain’s family lived.

“This is the dry cleaner here, and it slopes toward the river, this way,” he said, pointing toward the well. “We are nine hundred feet from TT26. That was the well that was sucking in the plume and feeding the area. They let it pump for thirty years and they poisoned a lot of people. When I look at it and I first saw the monitoring wells, every time I see them I just get angry.” Some gulls flew overhead, heading away from the ocean.

“I lived on Hagaru Road until I was four months old. I looked normal and everything appeared normal at first,” said Partain, wiping some sweat from his face. “It’s every woman’s worst nightmare, that something they can do when they’re pregnant can affect their unborn child. I’ve seen it when I talk to the mothers and they learn their child was poisoned and affected. I saw it in my mother’s eyes, the most heartbreaking look, despair, that I’ve ever experienced in my life. To look in my own mother’s eyes and see the realization that while she was pregnant, she drank something that harmed her child. I was forty years old when I saw that look. Part of me wants to go on base and show my family, my youngest daughter. She keeps asking me, ‘Is what’s happening to you going to happen to me, Daddy?’

“I don’t want these things burning in my head, but I don’t want to stick my head in the sand either. I don’t want to forget about it. I have to understand it.”

Death in old age is inevitable, but death before old age is not.

—RICHARD DOLL

M
OST OF THE TIME, BREAST CANCER IS A DISEASE OF
grandmothers. At the time my grandmothers got sick, reproductive cancers were not openly discussed. My mother’s mother’s mastectomy was obvious, though, as a sort of chasm under her matronly dresses, and it loomed large in my childhood imagination. I never knew my father’s mother. He was only nine years old when she became ill in Richmond, Virginia. For many years, she would go in and out of the hospital for surgeries or radiation therapy until she died in 1961. To this day, my father loves morning time, because that’s when his mother was happiest and strongest, singing in the kitchen and working in the garden. He never gleaned what kind of cancer Florence really had, and it’s even possible she didn’t know. I’d always heard she died from sort of stomach cancer, and it was only recently that I’d learned it might have been ovarian cancer, which is genetically related to breast cancer. I pursued it with my dad. “The information I got was always
filtered through protective layers,” he said, fifty years after the fact. “They tried to keep hidden the information that she had cancer. The doctor believed that no patient should ever be told they have cancer.” I asked my aunt. “Well, I believe she had some sort of intestinal cancer,” she said.

I sent away for my grandmother’s death certificate from the Virginia Division of Vital Records, hoping it would have clues. It did. Immediate cause of death (A): malnutrition. Due to (B): metastatic cancer. Due to (C): pseudomucinous carcinoma. I asked my doctor about this diagnosis, and she said, yes, most likely ovarian cancer.

Because of its genetic link to breast cancer, ovarian cancer is also of interest to breast cancer researchers. When breast cancer runs in families, ovarian cancer is often lurking as well. Together, they form a dismal couplet called inherited breast-ovarian cancer syndrome. I’d heard that my great-grandmother, Florence’s mother, had also died of cancer, but again, no one was sure what kind. My father had been told it was abdominal cancer, another likely euphemism. Off I wrote to the Will County, Illinois, Clerk’s Office, Division of Vital Statistics for her death certificate. I learned that Anne Higinbotham died in 1930 at the age of fifty-eight. “Principal cause of death: Cancer of Lung. Other contributory causes of importance: Cancer of Breast.”

Bummer. Two generations in a row of related cancers, only two generations removed from me. Plus a grandmother on my mother’s side. After I received the death certificates in the mail, I pretty much ran to see a genetic counselor. I knew the odds if I inherited a mutation in the BRCA genes: up to an 80 percent chance of developing breast cancer and a 45 percent chance of developing ovarian cancer. Shonee Lesh listened to my family history and made a chart full of circles and squares that resembled a geometric child’s puzzle.

“My job is to look for patterns,” she said. “On your mom’s side, there are cancers all over the place, but they don’t line up for major concern. It’s your grandmother and great-grandmother on your father’s side that are the concern. BRCA is the most probable explanation. It’s high enough for us to have this conversation and for you to be tested.”

My insurance company, however, disagreed. It would pay for testing if I had a first-degree relative with breast cancer (mother, sister), but not for grandparents, even two in a row. The BRCA genes are patented by one company in the United States, Myriad Genetics, and it has decided the test to decode the BRCA1 and BRCA2 genes will cost its customers about three thousand dollars. It’s expensive enough to make insurance companies fairly ruthless about it.

BRCA genes are most commonly found in eastern European Jews, with about one in forty carrying the most common genetic errors (in the general population, the rate is about one person in five hundred). But my Higinbotham foremothers were not Jews. They might have carried other mutations in the BRCA genes, such as one known to have arisen in Iceland in the mid-sixteenth century. This mutation, called 999del5 BRCA2, developed because of a missing piece of DNA in a single individual who enjoyed some reproductive success. Or my grandmothers could have inherited one of the seven hundred other distinct cancer-causing variants found in the BRCA genes among Dutch, Germanic, French, Italian, British, Pakistani, or French-Canadian populations.

The BRCA genes are the most common and deadly of the genetic variants, but there are numerous others—some discovered, some not yet—my grandmothers could have inherited. In families with histories of breast and ovarian cancer, less than half of them
have BRCA mutations. It’s also remotely possible that my foremothers, coincidentally, developed their own, unrelated, non-inherited mutations. In total, only about 10 percent of breast cancers are believed to stem from a heritable gene flaw.

The average lifetime risk of breast cancer in the United States is one out of eight, or 12.2 percent of women who reach the age of ninety. When Lesh plugged my risk factors into something called the Tyrer-Cuzick Risk Assessment Model, it calculated my risk at 19.8 percent. Lesh told me that when an individual’s risk reaches 20 percent, doctors recommend aggressive screening, such as annual or semiannual pelvic ultrasounds (for detecting ovarian cancer) and semiannual breast MRIs in addition to mammography. But absent BRCA testing, the results of which could push my magic risk number way up, I, like most women, would be more or less on my own.

IF CANCER IS A DISEASE OF AGING, THE OLDER WE GET, THE MORE
vigilant we need to be. It seemed like a good idea to understand the risk factors. Age and family history may be the major ones, but as I was learning, they’re not alone. Other standard risk factors are early puberty, late menopause, obesity, older maternal age, a record of a previous breast abnormality, and race (white women have a slightly higher risk than African Americans and a considerably higher risk than Asians or Hispanics). But—and here’s the disconcerting part—most people who get breast cancer have few of these risk factors, other than the big buckets of age and race. A stunning majority of women with breast cancer—90 percent—have no known family history. Equally perplexing, most women with
the risk factors, even a bunch of them, still never get breast cancer. In other words, the standard risk factors are fairly useless. We still don’t really know what causes breast cancer.

Obesity is a good example of how confusing things can get; it’s a risk factor for postmenopausal women, but oddly, a protective factor for younger ones. Other risk factors have been or are being considered for inclusion in risk models, and if you’ve read this far, you know some of them: radiation and chemical exposures, alcohol consumption, a high-fat diet, use of birth control pills, hormone replacement therapy, and nationality. Women in the United States and the Netherlands have the highest rates in the world. Japan has among the lowest. Scotland is middling. Interestingly, women in China get the disease, on average, ten years earlier than their counterparts in North America. Lately, a newish risk factor has emerged, and it’s not one often thought about: breast density. If you haven’t been clued in, you’re not alone. One fifty-year-old friend told me she’d recently returned from a mammogram. The radiologist told her she had very dense breasts.

“Thank you!” she burbled, thinking it a compliment. I had to explain to her that the doctor was not commenting on her firmness, which is, it must be said, admirable. I told her that density is a measure of the ratio of fat to glandular tissue. She looked decidedly dispirited. Not only that, I continued, but dense breasts make reading mammograms difficult, and women with dense breasts are at higher risk for breast cancer, a double whammy. Now she was glaring at me. I changed the topic. But I’ll say more here. Two-thirds of women go into menopause with dense breast tissue, and one-fourth retain it afterward. Women with the densest breasts are believed to have a four- to five-fold greater cancer risk than their peers, making
density the biggest risk factor for cancer after age. It’s also the biggest risk factor you’ve never heard of: 90 percent of women do not know if they fall into this category.

IN A BETTER ATTEMPT TO KNOW MY BREASTS AND FORETELL
their destiny, I hied my aging, American self down to Dallas. There, I met Dr. Ralph Wynn. He is the kind of man you’d want to be your radiologist, should you ever need one. A soft-spoken Texan, he’s kind, careful, and very experienced. He’s been reading murky mammograms for over twenty years, and has put in time at some of the best cancer centers in the world. He can find the proverbial needle in the haystack, seeing minute “disruptions” in impossibly hazy fields of white-and-gray X-rays and sound waves. Although Wynn has recently been named director of breast imaging at Columbia University Medical Center, I was lucky to catch him while he was still practicing at the University of Texas Southwestern Medical Center and overseeing the country’s only commercially available 3-D breast ultrasound machine. I didn’t want to miss out.

It’s not easy to see inside breasts. If it were, mammograms wouldn’t miss 20 percent of all tumors. MRIs are better, but they require getting injected with a dye and spending thousands of dollars, not to mention enduring forty-five minutes of lying immobile in a tube the size of a small sewer main. They are the domain of highrisk women. Three-dimensional ultrasounds could be a decent compromise. They have been used in Sweden for years, but they are new to the United States and insurance will not pay for them yet. Wynn is participating in a national study to compare their effectiveness to mammography in a bid to get them more widely used. The general consensus is that ultrasound picks up more tumors than mam
mography, but it also picks up more lumps and shadows that are not cancers, the so-called false-positives that are the bane of women, insurance companies, and government task forces. Wynn wanted to know how many lives could be saved by this technology and at what cost. My interest, though, was how ultrasound can draw back the curtain on how my breasts are changing as they enter middle age.

For his study, Wynn enrolled several hundred women with dense breast tissue. He said he’d be happy to examine me as a test case. He asked me to send him two sets of mammograms—my oldest and most recent films—before arriving.

On the appointed spring day, Wynn met me in the lobby of the modern Seay Building on the sprawling University of Texas campus north of downtown. We walked past the immense lobby sculpture of shiny orange globules stretching to the high ceiling. “I think it looks like sperm,” said Wynn. I was thinking the same thing. He introduced me to Robin Eastland, the technician who would operate the 3-D machine, called the Somo.v. A cheerful Texan in her mid-thirties, Eastland led me to an exam room on the third floor and handed me a gown, which was, naturally, pink. When I was settled in, she told me that unlike mammography, this machine would not squeeze my breasts in a vise grip. The worst part of the procedure would be the cold gel.

I lay down on an exam table, and Eastland parted aside my gown. She held a tube of sonography gel over my right breast.

“Ready?” she asked.

I nodded, and the tube belched out a cold substance resembling Elmer’s glue. Eastland smeared it around. Then she maneuvered a book-sized square attached to a mechanical arm above my breast. The bottom of the square held a disposable chiffon-like screen that compressed and conformed to the outer half of my
breast. She pressed a button, and an automatic transducer on the other side of the screen moved down my breast like the rollers on a massage chair. The machine sent high-frequency sound waves into my tissue, recording the time it took them to bounce back. (Sonography is also used to help boats find deep-sea fish and to measure fetuses in the womb.) In my breasts, when the waves encountered a change in tissue density, such as from a cyst or rib, the signal hesitated, and the object’s size and location got marked as a dark color on a computerized 3-D map. The whole breast map took several minutes.

When we finished, we found Wynn in his reading station, which reminded me of the scene in
The Matrix
where Keanu Reeves meets the sentient machines. Six large screens surrounded a couple of office chairs in a small dark room, each flashing pictures of images from mammograms and ultrasounds. “I spend most of my time alone, sitting in the dark,” explained Wynn, who has close-cropped hair and round wire glasses. Now that he said it, I saw that he was a little pale. I wanted him to drink an Arnold Palmer and go play golf in the sun like normal doctors, but first I wanted to see my pictures.

One neat thing about digital 3-D ultrasound is that the CAD software can produce both coronal slices—like individual cuts of deli ham—or the whole ham hock from any angle you want. If you go for the slices, each one offers a view about two millimeters thick. Since the average tumor is twice that size, it will probably show up. The images aren’t as crisp as a mammogram, but the contrast is better. On a mammogram, breast tissue looks like a big uneven clump of snow, while a tumor might look like a cotton ball. On an ultrasound image, a tumor looks like a very dark patch on a bed of somewhat lighter patchiness. Wynn’s job description, then, falls somewhere between reading tea leaves and looking for eagles flying across a night sky.

First Wynn pulled up the rotating 3-D image of my breast, slightly flattened by the rollers and appearing taller than it was wide.

“It looks like a fat piece of French toast,” I said.

“Or croque monsieur,” he countered.

“Panini.”

“Grilled cheese.”

We’d now established we were hungry. To get through all the slices for both of my breasts meant reading about five hundred images. Wynn flew through these with his mouse wheel, moving from the nipple to the chest wall. He could have been Captain Kirk piloting at high speed through a remote, hazard-filled galaxy. “Your breast tissue looks nice and homogeneous,” he said. I’m relieved. But then he slowed down through some honeycomb patterns and told me my tissue is fibrocystic, especially toward the outer edges. This can be a risk factor for disease. He kept scrolling. “Here we can see ductal structures radiating from the nipple.” They looked like fuzzy spider veins of varying thickness, indicating that some contained cellular fluid.