Why the Women Most Likely to Die of Breast Cancer Have Gotten the Least Attention

Lianne Kraemer had been living with metastatic breast cancer for more than a year when I met her in December 2017 at the Henry B. González Convention Center in San Antonio. Throughout the week, more than 7,000 doctors, scientists and pharmaceutical-company representatives would descend on the city for the country’s most important breast-cancer conference. Inside the main exhibition hall, it seemed that every major pharmaceutical company was putting on its best come-hither show. A pair of young, lithe dancers whipped flowing fabric through the air at a booth for the drug Faslodex, a new injectable from Astra-Zeneca used to treat women with estrogen-fueled advanced breast cancer. Novartis had free cupcakes. Tesaro, a company developing new drugs for BRCA-linked breast cancer, had Nutella-branded ice cream cones. Espresso was available at Eli Lilly, and Pfizer had put out small cups of frozen yogurt. Medtronic, a medical-device company, had breasts of raw chicken at its booth so surgeons could test the PlasmaBlade, its new soft-tissue-dissection knife.

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Although I had worked as a health-care journalist for nearly a decade, I had never attended this particular conference. I was there to report on the latest scientific advances in breast cancer, but I was also an interested party. Three years earlier, at the age of 35, I had been diagnosed with breast cancer and begun what would be more than a year of treatment. My cancer responded well to the chemotherapy and targeted drug therapy my doctors prescribed, and I was, according to the evidence, cancer-free. I was grateful, but I wanted to learn more about women with metastatic disease whose breast cancer had managed to carry on despite treatment and spread to other parts of their bodies.

Kraemer, a smiling, energetic woman with dark brown hair and eyes, sat at a table in the back of the hall. There was no complimentary coffee or ice cream, just brochures stacked in neat rows and a small sign that said METAVIVOR. Founded in 2009, METAvivor is a nonprofit organization run by and advocating for metastatic-breast-cancer patients. In recent years, the group and others like it have tried to turn public attention—often focused on feel-good “survivor” stories—to the more than 160,000 women in America living with metastatic breast cancer. Having a presence at major conferences is part of a strategy to increase research funding for metastatic disease and raise awareness that for all the strides made in treatment, some 40,000 American women still die from breast cancer every year.

Despite the billions of dollars collected and spent on breast-cancer research over the past half-century, relatively little has been devoted to studying metastatic-breast-cancer patients or their particular forms of the disease. Doctors do not know why some breast cancers eventually form deadly metastases or how to quash the disease once it has spread. Patients with metastatic disease are typically treated with one drug after another, their doctors switching the medications whenever the disease stops responding to treatment. Eventually, nearly all patients with breast-cancer metastases run out of options and die, although in recent years, many have been living longer. Of the four metastatic-breast-cancer patients who founded METAvivor in 2009, three have died, but one is still alive, 13 years after discovering that her disease had spread.

Diagnosed with estrogen-receptor-positive breast cancer in January 2014 at the age of 37, Kraemer had a double mastectomy, chemotherapy, lymph-node removal, radiation and hormone treatment. She emerged from the yearlong ordeal relieved she had acted quickly—she’d felt a lump in her breast and was diagnosed the next month. Then, in June 2016, Kraemer was doing laundry when she felt a tingling in the right side of her lips. The next day, the right side of her gums and tongue started to feel weird too. “During that day, the crease on my right index finger felt like someone had put a slight rubber band around it,” Kraemer told me.

Kraemer emailed her oncologist, who recommended she get a brain MRI, and she asked her uncle, a neurologist, to review the scan. When he broke the news that it looked as if her breast cancer had spread and formed about a dozen small tumors inside her brain, she was stunned.

Three-quarters of women with metastatic breast cancer were originally diagnosed with early-stage disease. The idea that the breast cancer “came back” after initial treatment is a bit misleading. Women who undergo traditional chemotherapy shortly after an early-stage diagnosis, as I did, do so because their doctors believe they may have micrometastases—cancer growths outside the breast that are too small to appear on scans. Breast cancer that is treated and later metastasizes into larger tumors around the body somehow managed to survive the initial treatment. Women who declare themselves cancer-free have no way of knowing if they really are. Sometimes breast cancer continues to grow during treatment. Other times, breast-cancer cells remain alive and go dormant but then begin multiplying years or even decades later.

Often, though not always, newly diagnosed breast-cancer patients get abdominal scans, but they almost never have brain scans unless a symptom appears. (About a year after I finished treatment, I had a debilitating two-day headache and my oncologist recommended I get a brain MRI, which turned up nothing. I was diagnosed with a migraine.) Even if Kraemer had had a brain scan when she was diagnosed, it’s possible the tumors inside her skull were so small that they would have been invisible on an MRI.

When we first spoke by phone a few months after we met in San Antonio, it was clear that Kraemer had thought through every possible diagnostic scenario. Could her doctors have done more? Did the month that passed between the time she found a lump in her breast and her diagnosis make a difference? Kraemer had complications with her double mastectomy that delayed the start of her chemotherapy. Did this give the cancer time to spread to her brain? She will never know, but she believes that most likely, her metastatic breast cancer could not have been prevented.

“You can do everything right and still end up metastatic,” Kraemer said. “I just assumed that could never be me because I would catch it early, because I was on top of things. I believed the narrative that is pushed on women, that if you check your breasts and if you catch it early, you’re fine. That surely the women who are not O.K. must not have gotten good treatment or must not have caught it when they should have. I believed what I was told.”

Existing breast-cancer-treatment protocols fail in tens of thousands of women like Lianne Kraemer every year. In some cases, breast-cancer patients don’t have access to high-quality treatment or they ignore signs of the disease until it’s incurable. But more women who die of breast cancer succumb to the disease for no other reason than that it manages to outwit the protocols.

Pharmaceutical companies and researchers often test new drugs on metastatic patients before anyone else. These are women who are dying anyway, and they are the ones most willing to be part of experiments. But the goal for most drug development is to treat early-stage patients successfully and eradicate breast cancer before it spreads.

According to Cyrus Ghajar, a cancer biologist at the Fred Hutchinson Cancer Research Center in Seattle, 25% to 40% of early-stage breast-cancer patients already have cancer cells in their bone marrow, and these patients are, on average, three times more likely than those who don’t to develop other metastases later. It’s impossible to know if a patient has cancer cells in her bone marrow without driving a long needle into a large bone and aspirating marrow from inside. Ghajar, one of a relatively small number of scientists studying metastatic breast cancer full time, said that, in theory, patients could give consent to have their marrow drawn when they are placed under general anesthesia for lumpectomies or mastectomies. The results could tell doctors which women were more likely to face a recurrence of their breast cancer and therefore might need more treatment up front. “We don’t have a way to further stratify people, because we haven’t studied it enough,” Ghajar told me. “We don’t have enough samples.”

Ghajar pointed out that the Cancer Moonshot, a National Cancer Institute initiative launched by President Barack Obama and Vice President Joe Biden, does not explicitly provide funding to address the challenges of metastatic cancer. “How can you have a moonshot trying to cure cancer and not mention people dying of cancer?” he said.

Alana Welm, a molecular biologist, runs a lab at the University of Utah’s Huntsman Cancer Institute devoted to studying breast-cancer metastases. One of her research projects compares breast–cancer cells from a patient’s original tumor against cancer cells found elsewhere in the body after the disease spreads. The idea is to determine the differences between the cells to find clues about why some migrated and how they may then be affected by microenvironments inside the body. “Think about how hard this research is,” Welm said. By the time a woman is diagnosed with metastatic disease, her original biopsy tissue may no longer be available. In addition, it’s often hard to get a sample of a metastatic tumor, which may be buried inside the brain or located in a place that is difficult to access safely, as opposed to the readily available breast tissue that gets biopsied in early-stage patients. “I sometimes wait for years in between to try to get these samples,” Welm said. Welm and other researchers encourage metastatic–breast-cancer patients to consider making plans to have an autopsy done immediately after they die so that cells can be harvested, preserved and studied before they degrade.

After I finished my treatment for early-stage disease in February 2016, I did not celebrate. I did not feel cured. I felt scared. Although it is unlikely, my disease could recur. Some researchers estimate that breast cancer recurs in 20% to 30% of patients either locally or elsewhere in the body, but the odds vary significantly depending on the specific type of the disease a woman has and her treatment outcome. I was unnerved when I learned that I would not get even annual scans to look for signs of metastases. Studies published in the 1990s showed that detecting metastases through scheduled scans, rather than when a symptom appears, did not change survival rates, prognosis or quality of life. Scanning every breast-cancer patient post–treatment would be expensive and would undoubtedly lead to unnecessary medical intervention.

But imaging has gotten much better since the 1990s, with MRI, positron–emission tomography (PET) and CT scans able to detect tumors as small as a few millimeters. A 2017 study by researchers at the National Cancer Institute found that some 11% of women under 65 diagnosed with metastatic breast cancer live for 10 years or more. The year prior, George Sledge, chief of oncology at Stanford, had published a paper in the Journal of Oncology Practice called “Curing Metastatic Breast Cancer.” In it, he suggested that the existing paradigm around metastatic breast cancer—that it is incurable and not worth looking for—should be updated in the face of new science. “If some patients are cured,” he wrote, “might not we cure more?”

About a month after her diagnosis of metastatic breast cancer, Kraemer was going through her belongings, hoping to save her parents the agony of discarding her possessions after she died, when her hands settled on a photograph. It was a picture of a smiling couple: Kraemer and an ex–boyfriend, a Nebraska native named Eric Marintzer. After he had unceremoniously dumped her more than a decade earlier, Kraemer had thrown out every physical reminder of him. He had given her a waffle iron as a gift, and she had smashed it to bits in an alley. But somehow, this photograph had survived the reckoning.

Like any modern woman, Kraemer picked up her iPhone and found Marintzer’s Instagram profile. She scrolled through images, her thumb moving so quickly that she accidentally “liked” one. Panicked, she threw her phone across the room so hard that the screen shattered. Then she decided to come clean. She had just been diagnosed with a terminal disease. What did she have to lose?

Kraemer sent Marintzer a message, saying she had seen his photographs and accidentally “liked” one. To her surprise, he wrote back. They started texting, and eventually he asked her out for drinks. She was living in St. Louis but often traveled to Chicago, where Marintzer lived. Whenever she went, they got together. It was refreshing to be with someone who didn’t know about her disease. “Everybody in my life was treating me with kid gloves,” Kraemer said.

After spending New Year’s Eve together, they talked about whether they should officially be a couple again. “There’s something you need to know,” Kraemer said. Marintzer listened and then said her metastatic breast cancer was no reason to change their plans. Before long, she moved into his condo and they picked up where they had left off.

Women who have breast cancer that has spread to the brain often die within a year or two of the diagnosis. To shrink the tumors inside Kraemer’s brain, one oncologist recommended she undergo what’s known as “whole brain radiation,” an extreme but common procedure for patients with multiple brain tumors. Such treatment can cause debilitating fatigue and permanent cognitive damage. Kraemer instead enrolled in a clinical trial to test whether a relatively new drug called Verzenio could beat back brain tumors in women with estrogen-receptor-positive metastatic breast cancer. Kraemer went on the drug, and most of her tumors stayed the same size for eight months, a good sign. The largest even shrank. The drug also kicked Kraemer into chemical menopause, which her oncologist thought might help cut off the supply of estrogen her type of breast cancer was feeding on.

But the drug had side effects, including chronic diarrhea that required Kraemer to get IV fluids to prevent dehydration. Her oncologist decreased the dose of the trial drug, which stopped the diarrhea but also the menopause. Soon her tumors began growing again. The clinical–trial protocol dictated that Kraemer had to stop taking Verzenio—if her cancer was growing, the drug was not working. But a new oncologist had a different take. Nancy Lin, a metastatic specialist at the Dana-Farber Cancer Institute in Boston, speculated that the drug actually was working and that the estrogen produced by Kraemer’s ovaries was canceling out its effects. The problem was that the clinical-trial rules did not allow patients to start hormone therapy in the middle of the study. “I said, ‘I don’t care what I have to sell or do, someone’s going to get me that damn drug back,’” Kraemer told me. Lin lobbied the drugmaker Eli Lilly to allow Kraemer to have Verzenio and begin hormone therapy. Miraculously the company agreed to sponsor a new trial with just one patient, Kraemer.

The treatment kept Kraemer’s brain tumors stable for six months. But in January 2018, a scan showed they were growing. Still worried about the cognitive side effects of whole brain radiation, Kraemer began specialized radiation treatment that would hit only her largest tumor. Her brain tumors remained stable for a few months, but eventually they started growing again. Kraemer enrolled in yet another clinical trial, this one testing whether a drug that has been shown to work against certain types of liver and kidney cancer might help women with metastatic breast cancer.

In September 2018, I flew to Chicago to see Kraemer. I met her and Marintzer for breakfast the day after I arrived and couldn’t help thinking they looked entirely, astonishingly normal, their predicament hidden inside a relationship they were trying hard not to define by the fact that Kraemer was battling a disease that would most likely cut her life short.

Later that day, I asked Kraemer how her disease affects her everyday life. She said her largest tumor in her brain had begun to impede her ability to use her right hand. She could no longer hold chopsticks or write legibly. She also had frequent migraines and once burned herself on a hot pan because she couldn’t feel that her hand was on it. She said ever since her targeted brain radiation, she had had trouble multitasking and struggled to have a conversation if music was playing in the background. I asked if she felt like she was dying. “Yes and no,” she said. She had a loving boyfriend, a tight-knit family and a good life, but her symptoms were getting worse. “I am in a decline,” she said.

Kraemer babysat in high school, worked as a nanny in college and chose a career as a speech pathologist for kids. “All I wanted to do was be a mother,” she told me. After her early-stage diagnosis, Kraemer froze eggs harvested from her ovaries, and every three months, she pays to keep them in storage. “I know I’m not going to use them, but I can’t stop paying for them and just throw them away,” she said.

In December 2017, Kraemer had told me that the upcoming Christmas holiday would probably be her last. But in December 2018, she and Marintzer went shopping for a Christmas tree and picked out the biggest one they could find. It was so large, they had to move most of their furniture out of their living room. “We know that the number of Christmases Lianne has are limited,” Marintzer told me. “Let’s do it up.”

A scan in January 2019 showed that several of Kraemer’s tumors were growing again. In the months since, she has been treated with multiple types of chemotherapy and more specialized radiation. But her symptoms are becoming more pronounced. Kraemer’s right hand and arm are now mostly useless. Her right foot and leg are also not working properly, and she walks with a noticeable limp. She is weighing whether to allow a neurosurgeon to try to excise the largest tumor inside her brain. The surgery would be risky, so Kraemer and Marintzer decided to take one more big vacation. In August, they traveled to the Greek islands and stayed on the cliffs of Santorini.

“All things considered, I’m really lucky,” Kraemer, now 43, told me recently. It has been more than three years since she was diagnosed with metastatic breast cancer in her brain. She has survived longer than most women like her, thanks to new drugs, clinical trials and creative thinking by her doctors. Kraemer is proof that research and science can change the fates of metastatic-breast-cancer patients. We just need more of it.

Excerpted with permission from Radical: The Science, Culture, and History of Breast Cancer in America, by Kate Pickert. Copyright © 2019 by Kate Pickert.