Written by Sasha Ekstrom
May 9, 2017
An accomplished physician and academic with more than 20-years-experience in dermatology and internal medicine, Dr. Kary Duncan knows to trust her instincts. Having grown up on the South Side of Chicago, one of five children in an Irish-Catholic family, Kary knew from a young age that she wanted to pursue a career in medicine. “It was a calling,” she reflects, “a vocation. I knew it was the best way to serve others with my gifts and interests in math and science.”
She followed her calling, becoming the first in her family to attend the University of Notre Dame, the first to attend medical school, the first to become a physician. Over the years her instincts matured, providing insight and answers as she offered holistic care for her patients, helping them navigate conditions ranging from psoriasis to melanoma to other complex dermatologic diseases. These same instincts led Kary to one of her most surprising diagnoses. Her own. In 2011 with three children aged 12, 10, and 9, a private dermatology practice, and husband David Duncan, CEO and family owner of Silver Oak & Twomey Cellars, Kary was in excellent health as she juggled the family’s incredibly busy, full life. In some of the best shape of her life, she enjoyed cycling, pilates, and walking. “It never dawned on me that I might be ill.”
However, upon reviewing results of a routine blood test, Kary was surprised to see that her platelets were low and the MCV, or size, of her red blood cells was increased. After excluding typical etiologies for low platelets and an elevated MCV, Kary’s gut told her something wasn’t right. She referred herself to Dr. Andrew Leavitt, a Professor in Hematology & Oncology at the University of California, San Francisco, who looked at her peripheral smear and told her that her cells were dysplastic. He recommended a bone marrow biopsy.
To Kary’s shock, the biopsy showed an aggressive form of MDS, or Myelodysplastic syndrome, a rare disease in which the bone marrow fails to make enough healthy red blood cells, white blood cells, or platelets. If left untreated, the condition would advance to leukemia or bone marrow failure, both potentially fatal. Dr. Leavitt predicted that she would need a bone marrow transplant in the next 1-2 years. Alone in the doctor’s office – she had not been expecting bad news – Kary, known by her family, friends and patients for her innate strength and pragmatism, burst into tears. “Nothing can prepare you for that kind of diagnosis. The anxiety of the unknown put me into a tailspin – and I’m a doctor.”
Back at home, Kary and David began the process of coming to grips with her condition. She was completely asymptomatic and required no immediate treatment, but the inevitable bone marrow transplant loomed ominously over her head. She, Dr. Leavitt, and Dr. Lloyd Damon, Chief of the UCSF Hematology Clinic and Director of the Blood and Marrow Transplant Program, decided to take a wait-and-see approach, with Kary visiting Dr. Leavitt’s office every three months for monitoring and testing.
During this period, which would last the next four years, Kary told very few people about her MDS. She loved her life, felt perfectly fine, and she wanted to continue living her life in the same “normal“ manner. Relying on strength she built while in medical school – “it was like boot camp” – she continued working, volunteering in the community and caring for her family. She felt her mother, who passed away in 2008 at the age of 64 from multiple myeloma, by her side. “My mom never complained.” she reflects. “I followed her example, accepted my situation, and vowed to fight it to the best of my ability.”
The V Foundation was very supportive and helpful to Kary and David during the initial diagnostic stage. Dr. Robert Bast, Vice President for Translational Research at the University of Texas MD Anderson Cancer and Chair of the V Foundation’s Scientific Advisory Committee, put Kary in touch with MD Anderson’s MDS expert and he, as well as a few other MDS experts, agreed with Kary’s diagnosis and prognosis. With confirmation that Kary would eventually need a bone marrow transplant, the search for a suitable match began. Kary’s four siblings were the first evaluated as potential donors. However, their blood tests, similar to Kary’s, showed low blood counts and elevated MCVs. A disquieting pattern surfaced as each sibling was ruled out as a potential donor, pointing to a possible hereditable characteristic at the root of Kary’s MDS, her mother’s myeloma, and a maternal uncle’s B-cell lymphoma. With this information, Kary sensed she was dealing with something greater than her MDS – something that could potentially affect her entire family.
Kary brought these concerns to her doctors at UCSF, but nothing materialized as a diagnosable hereditary condition. Determined to follow her instincts that “something was not right in my family,” Kary continued her search. At a routine visit with Dr. Leavitt, both Kary and Dr. Leavitt showed up with the same paper written by Dr. Lucy Godley, a Hematologist-Oncologist from the University of Chicago, who was conducting a study on familial hematologic malignancies. Dr. Leavitt knew Dr. Godley from years ago, when she was a fellow in his lab. Thankful to have found someone who could dig deeper into her situation, Dr. Leavitt put Kary and Dr. Godley in touch with each other and Kary enrolled her family in the study. By a small miracle, Kary was even able to find a sample of her mother’s tissue to include in Dr. Godley’s research. With the study underway, Kary awaited the results, hoping for answers.
Those answers began to emerge in the fall of 2015. Dr. Godley’s lab discovered that the three people in Kary’s family with hematologic malignancies all had the same mutation in the CHEK2 gene, a tumor suppressor gene that works to repair damaged strands of DNA. In the same pathway as the BRCA gene, which is known for its influence on breast and ovarian cancers, CHEK2 is not as well understood. The CHEK2 mutation is known to confer an increased risk of certain solid organ cancers (e.g. breast, colon, prostate), but had not been regularly associated with hematologic malignancies. Dr. Godley, however, in her research, had several families with CHEK2 mutations and blood-related cancers, and she felt strongly that this mutation was somehow involved in Kary’s MDS and her two relatives’ hematologic malignancies. Dr. Godley cautioned that Kary should not have a sibling donor for her transplant, as each sibling had a 50% chance of also having this CHEK2 mutation. Kary was also counseled that she should be doing more aggressive screening for breast, colon and possibly thyroid cancers and that her children also had a chance of harboring this mutation.
Both relieved – her instincts had been right – and troubled to learn of the mutation, Kary began researching CHEK2, knowing her battle with MDS was only the beginning of a much longer journey for her and her family. This CHEK2 news and its implications were just starting to sink in when word came from Dr. Leavitt in December 2015 that it was time to pull the trigger on the bone marrow transplant. Although Kary was feeling terrific, a routine bone marrow biopsy revealed that her blasts had increased to 5%, a critical level that signified the transplant was needed. Fortunately, a perfect 10/10 donor had been identified through the “Be The Match” program and transplant preparations were underway.
In June 2016, four and a half years after her initial diagnosis, Kary arrived at UCSF for her bone marrow transplant. Under the knowledgeable care of Dr. Lloyd Damon, Kary started her treatment. She began with chemotherapy for a week to kill her existing bone marrow cells, and then underwent the transplant of the donor’s stem cells into her peripheral blood.
Everything went incredibly smoothly, thanks to a skilled and compassionate team at UCSF and Kary’s health and upbeat attitude. Out of the hospital in three weeks, Kary was back home in the Napa Valley after only 70 days – the doctors initially recommended 100 days in San Francisco — where she could be under close medical supervision. With the loving support of her family, the community, and her inner strength and positivity, within six to seven months Kary was feeling great and able to exercise again and start back at work. Though she remains on immunosuppressive medications to avoid graft-versus-host disease (GVHD) – a condition in which donor bone marrow or stem cells attack the recipient – Kary is counting her blessings.
With her trained physician’s eye, she’s also keeping close watch on signs or symptoms which may signal other cancers – thyroid, breast, colon – linked to a CHEK2 mutation. Even as an expert in the medical field, it’s difficult for Kary to navigate who she needs to see for care – her primary care doctor? a specialty clinic? – and keep on top of the necessary screening and diagnostic tests. As she charts the implications of CHEK2, she is mindful of the average person. Without the advantage of a medical background, how would someone in her situation know where to turn?
Such questions have galvanized in Kary a resolve to use her experience to help others. Throughout her medical journey, Kary’s instincts led the way for her diagnosis and treatment. “I now have the opportunity to turn my health challenges into hope for others,” Kary explains, “to promote the awareness, the innovation, and the compassionate care that offer hope for patients with conditions like MDS and CHEK2 mutations.”
By sharing her family’s story, Kary seeks to educate patients, clinicians and genetic counselors about the latest research in the arena of familial hematologic malignancies. Dr. Godley estimates that the percentage of patients with hematologic malignancies that may have a hereditary component approaches that of patients with other cancers, such a high-risk breast cancer. She is hopeful that with continued research and collaboration in this area, progress will be made in producing ways to both prevent and treat hematologic malignancies, parallel to the progress that has been made in hereditary breast and ovarian cancers. “The understanding of CHEK2 mutations, including the implications for blood cancers, is several years behind where BRCA is today,” Kary shares. “Many people don’t know that centers like the BRCA Center in San Francisco, the beneficiary of this year’s Fund-a-Need, also conduct CHEK2 research, as well as research on other familial cancer syndromes, and help patients with cancer surveillance and treatment. It was only in being asked to be the Vintner Honorees this year at the V Foundation Wine Celebration that I learned of the BRCA Center at UCSF and that I can be followed there with my CHEK2 mutation issues! We need to address the communication gap.”
Kary, along with her husband David, also strongly support medical innovation. “Without such innovation,” Kary reflects, “I might not be here.” Research at institutions like the BRCA Center, the University of Chicago, and UCSF are critical to future treatments – and give patients like Kary hope, not only for their own health, but for that of future generations. “There is a chance that my children also carry the CHEK2 mutation. Innovation is the key to developing new treatments – like drug therapy, which now exists for BRCA-associated cancers – that emerge from an in-depth understanding of how mutations affect the development of cancer.”
It’s not only at large, university hospitals that research needs to happen, but also at regional hospitals. In 2016 Kary and David established the Kary and David Duncan Endowment for Medical Innovation at the St. Helena Hospital, where they live in the Napa Valley. The endowment, which supports cardiac care, promotes state-of-the-art patient care that has not only served their community, but has become the gold standard for cardiac centers world-wide.
Finally, Kary’s experience has only underscored the need for quality, compassionate care for those in need. “As a patient, you want to be held in the arms of your doctors and caregivers, and guided through your complex medical journey.” The doctors at UCSF provided that level of care for Kary, always demonstrating expertise linked with kindness. “They were responsive, caring, thoughtful – they worked non-stop. I had total faith in the team.”
Empathetic care is essential for patients who, like Kary, grapple with the initial anxiety after a diagnosis. “My experience as a physician brought me peace and calm at a time when my family and I needed it,” Kary shares. “How can we bring peace and calm to those struggling with a diagnosis and treatment options?” Very simply, it starts with knowing where to go for treatment, how to find support, how to manage the medical system. “Patients need to be put in touch with experts – like those at the BRCA Center, UCSF or the University of Chicago – that can offer answers and craft individualized treatment plans.”
Back home in St. Helena, Kary is getting back to what she loves – focusing on her life as a wife, mother, and physician. On her dining room table sits what she likes to call a “Bowl of Gratitude,” letters, well-wishes, and prayers from family, friends and the local community. Her voice catches as she talks about how the outpouring of support “helps sustain me and give me strength.”
Kary has an uncharted road ahead, but is determined to use her journey to help others. Though she has come a long way since first following her vocation, she continues to use the gifts she’s been given – even through a difficult situation – to serve.
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