Diagnosed with an aggressive form of breast cancer, Ohio Rotarian and medical researcher Kimberly Koss decided to make a costly personal contribution to the field.
In May 2014, Kimberly Koss made a decision that she hopes will help thousands of other women. It is also a decision that she would never recommend to anyone else. For her, it was made possible by a singular alignment of stars in an otherwise foreboding sky.
Only a month before, Koss’ life in Mason, Ohio, had been a bustle of family, friends, work, and volunteering with the Rotary Club of Blue Ash-Montgomery. She founded a tutoring company called Excel Academic Services in 2008, after leaving her postdoctoral research position in the cardiovascular biology division at the University of Cincinnati College of Medicine. And at age 58, Koss and her husband of 27 years, attorney William Ehrstine, spent as much time as possible with their two children and six grandchildren.
“The phrase ‘Renaissance woman’ is overused, but not in this case,” says Joseph Mathews, a close friend and a member of Koss’ club. Mathews, who is also a past governor of District 7870 (parts of New Hampshire and Vermont), adds that Koss is equally passionate about playing Chopin, serving her community, and coaching budding chemists – in fact, she’s won accolades for all three.
On 28 April 2014, Koss learned she had breast cancer. Working in the health sciences tends to instill a hyper-awareness that illness can strike at any moment, but it still didn’t prepare her for the diagnosis. “In those early days, like many women, I was immobilized by grief and shock,” Koss recalls. Two weeks later, she received an even more menacing forecast: Her tumor had tested positive for an especially aggressive type called triple negative breast cancer (TNBC), so named for the absence of three types of receptors: estrogen, progesterone, and human epidermal growth factor 2 (HER2). From a treatment standpoint, these receptors serve as chinks in the cancer’s armor. Without them, tumors do not respond to traditional systemic chemotherapies that target those receptors. As a result, there is no targeted or standardized therapy for TNBC.
Each year in the United States, more than 220,000 people – 1 percent of whom are men – receive a diagnosis of invasive breast cancer. In 2014, about 40,000 people died from the disease. Worldwide, TNBC accounts for 10 to 20 percent of breast cancers. TNBC most commonly afflicts African American women younger than 40; as a Caucasian woman in her late 50s, Koss doesn’t match that profile. But as a researcher, she is well aware that in the United States, a black woman with any breast cancer is 40 percent more likely to die than her white counterpart, for reasons that include the aggressive nature of the cancers, socioeconomic factors, and limited access to services. “It isn’t just a matter of the treatment,” Koss says. “It’s also access to the resources that sustain us through cancer: support groups, economic assistance, wigs, breast prostheses, and bras. All of this affects outcomes.”
Immediately after receiving her diagnosis, Koss was told she would need surgery; the question was when to begin chemotherapy. In certain cases, preoperative chemo, called neoadjuvant therapy, is administered with the goal of shrinking larger tumors or even eliminating all detectable disease prior to surgery. Depending on the patient’s situation, some experts believe this preoperative treatment can lead to better outcomes, in part because a person’s response to neoadjuvant therapy may predict overall response and guide postoperative treatment. Other experts believe that surgery should come first. Given the nature of Koss’ cancer, both her surgeon and her oncologist strongly recommended preoperative chemotherapy. Without it, they told her, she would have to wait at least six weeks after her surgery before starting chemo.
When it comes to treatment for TNBC, one fact is indisputable: Much about this defiant disease is not understood. As a scientist, Koss comprehended the elusive and complex nature of her cancer, making for some bleak moments. But she also felt inspired. “I’ve always believed knowledge is power,” she says. “In the initial days, I could not have foreseen how incredibly difficult my journey would become. But I’m grateful that I had the training to be an informed partner in my own care, and I encourage other cancer patients to learn as much as they can. When fighting an aggressive cancer, ignorance is not bliss. It can limit your options.”
The tumor in Koss’ breast proved to be extraordinarily invasive, even for TNBC. She knew the potentially metastatic cells needed to be not only removed but decoded. Until the unique mutation and replication mechanisms of TNBC can be better understood, however, physicians and patients are fighting blindfolded.
Koss then realized she had the power to make the best from the worst. While hospitalized for diagnostic tests in May 2014, she proposed an idea to her longtime friend and former colleague W. Keith Jones, with whom she’d conducted research on molecular cardiology in the mid-1990s. He was preparing to take over as chair of molecular pharmacology and therapeutics at the Loyola University Chicago Stritch School of Medicine, and had traveled to Ohio to visit Koss. She told him that she had come to a decision. She wanted to make a contribution to cancer research: her tumor, in its purest state.
Among the reasons cancer can be deadly is that the cells are chaotic and do not respect neighbor cells. The most destructive cancers can proliferate indefinitely and deprive healthy cells of needed blood supply. In a human, this mayhem is catastrophic. In a research setting, it can prove extremely useful, yielding multiple, and in rare cases unlimited, samples for analysis. (Such perpetual cell lines, which are indispensible to research, were the subject of the 2010 best-seller The Immortal Life of Henrietta Lacks.) But it’s uncommon for researchers to gain access to cancer cells that haven’t been exposed to preoperative chemotherapy, which decreases their chance of replicating into “immortal” lines.
Koss decided to prioritize the need for exactly this type of specimen above her own need for urgent medical intervention. “I would never recommend that anyone delay or forego treatment,” she stresses, “but my case was not the norm.” When she considered her years in biomedical research, the experts and lab facilities to which she and her colleagues had access, and the scarcity of clinical data about TNBC, Koss knew she had an opportunity that would be impossible to reproduce.
Jones describes the moment Koss explained her plan to him. “I was honored to have this trust from my friend; this is the core of the relationship,” he says. “She knew that she could trust me to carry out what she wished. Kim and I had been postdocs together in collaborating labs. We were close professionally and good friends. Over the years, we’d always stayed in touch, going to dinner together with our spouses.
“Of course, from a scientific stance, I hated that she would forego the chemotherapy recommended by her physicians,” he continues. “She would be giving up potential benefits of neoadjuvant therapy, as well as opportunities to enroll in clinical trials that included such therapies. But she said the decision was made, and asked that I respect it. And so I did. She was very clear, and I think we both cried at the time.”
In her role as a mother, grandmother, and mentor, Koss stresses the capacity of each individual to do something good. “I emphasize to students that they have the power to change the world, and I teach them how to develop and tap into that,” she says. “I am teaching my grandchildren that they have the power to withstand adversity, and even ridicule. I remind my five-year-old granddaughter that she has ‘Lillian-power,’ and she claims this with a raised fist. She already believes she has the power to develop cancer treatments for cats – the animals she loves. I am constantly instilling in the girls, especially, that they have the faith and the intellectual, spiritual, and moral power to overcome and succeed. It is my belief that they will each make that difference.”
This spirit – combined with a network of scientists – yielded an ambitious plan. By the time Koss went for her radical mastectomy in June, five research facilities were prepared to receive specimens harvested during surgery. Moments before rolling into the operating room, Koss was orchestrating details as a plane waited on a nearby tarmac. The transported tumor cells were slated for culture in mice at one facility, and genetic analysis at others. “The fact that her primary, secondary, and metastatic TNBC tumors were unaffected by chemotherapy and all harvested at the same time renders them extraordinarily useful for studying the ways in which TNBC cells replicate and metastasize,” Jones explains.
Understanding this cancer could contribute to improved treatment – but not for Koss.
“I was never pinning my hopes on a last-minute cure for myself,” she says. “I always understood that this research had little to zero promise for my own clinical treatment. But I began this for future generations. I am responsible for the decision. No doctor ever told me it was a good or ‘right’ decision, and certainly no one tried to persuade me to forego preoperative chemotherapy.”
As the work in the labs began, Koss struggled through a brutal six months of postoperative treatment. The rigor of the chemotherapy regimen was designed to match that of her cancer, and it took a devastating toll. Koss suffered from chemo-toxicity and developed multiple medical complications. “It’s unusual for someone to undergo the number of hospitalizations, operations, and hypersensitivity reactions that I experienced,” she says. “In November, my medical team discontinued the chemo, determining that I could physically handle no more.” But on 23 December, she received a Christmas present that helped counterbalance the months of misery: Researchers had cultivated an aggressive TNBC tumor – genetically identical to Koss’ – in mice. “This is a success that we hope will lead to the next steps of in vitro cultivation,” Koss says.
Jones acknowledges the unique position of caring for the tissues and working to advance research on tumors from a person you love. “However,” he says, “I also considered it a privilege. I agreed to do it for her, and for medical science.”
Koss and Jones are establishing the Koss National TNBC Research Foundation to support the work; Mathews will serve as CEO. “My hope,” Koss explains, “is that eventually individualized vaccines for various breast cancers can be developed and that immunotherapy – a treatment approach in which the patient’s own immune system fights the cancer – will be a viable form of treatment for TNBC. I also hope the research from my tumors will lead to therapies specific to TNBC cancers. I want this research to open new avenues of treatment that are safe, standardized, and have greater efficacy. Now there is no standardized treatment for TNBC cancers, and women are dying. The current approaches are expensive and highly toxic. There has to be a better way.”
Early detection is a key element in the fight against TNBC, and researchers hope the study of proteins on Koss’ tumors may also enable the development of a reliable blood test for TNBC, and possibly other forms of breast cancer.
Those who know her describe Koss as a hero – self-sacrificing, indefatigable, vibrant. While she acknowledges her strength, she credits her faith, her loved ones, and the team directing her therapy. “I have an incredible medical team, and I’m so appreciative of their care,” she says. “There are so many kindnesses. I’ve been blessed with dozens of wonderful friends during my treatment.” Koss recalls one “incident of joy” in which two friends from high school visited her during an eight-day hospitalization. Using ribbons from packages and the scarves Koss uses to wrap her now bald head, they decorated her IV pole and began a healing dance around the medical-device-turned-maypole. “It was wonderfully hilarious. Right in the hospital room. Our amazing nurses and aides brought refreshments, and we all shared an uplifting laugh. What a blessing to have these friends offering joy and hope in the midst of fear and pain.”
Neither radiation nor additional surgery is a current option for Koss, and she’s facing new diagnoses that arose during the postoperative chemotherapy. She is unsure what will come next but knows it will include more time in the hospital. Yet she doesn’t dwell on dread. She insists that others should not suffer like this, either from cancer or the attempted treatments. She focuses on that day when her friends danced around her in the oncology unit. What started out as misfortune is now inspiring others to find the “better way” in which Koss fervently believes. — Shirley Stephenson