Personal Stories, Research
By: Susan G. Komen
Dr. Neil Spector, Chapel Hill, North Carolina – Physician Scientist
“On July 17, 2009 I was told I had 72 hours to live. I was transferred to Duke University Medical Center, where the cardiac team performed a heart transplant.”
“Being chosen as a Komen Scholar was transformative. Komen’s commitment to research allows individuals to continue their important work; it’s a priceless relationship to me, and I’m incredibly indebted to be able to continue my passion. I’m very grateful that Komen recognizes the urgency, and that they can proudly say, ‘We’ve got a portfolio of research, and we’re not leaving anyone behind.”
For me, becoming a doctor was a natural fit between science and the ability to transform it into something clinically meaningful. I chose oncology as a field because treating people with breast cancer is a golden opportunity to be a physician, a family practitioner, a spiritual advisor, a mentor, a teacher – there’s a very positive dynamic interaction between patient and doctor.
As an oncologist, you get to know people – cancer strips people down, and everyone faces the same situation, confronting their mortality.
I know something about facing my own mortality. In the mid-90’s life was great. I’d completed my residency in internal medicine at Parkland Hospital in Dallas, and a fellowship in medical oncology and hematology at Harvard Medical School. I’d moved to South Florida to head the bone marrow transplant unit at the University of Miami Cancer Center, and I met and married my wife, Denise. I competed in marathons, and was very physically fit.
So it came as a shock when I began having transient cardiac arrhythmia, a period of “brain fog” that lasted several weeks without explanation, followed by a variety of bizarre symptoms including a painful burning sensation in my heels that made it difficult to sleep. The cardiac arrhythmia intensified over the ensuing four years. . Repeated blood tests came back inconclusive, but I began to have a strong suspicion that I might have Lyme disease. I’d done a lot of running through the woods in New England, so I must have been exposed.
I was continually told that my test results were non-specific, even though I repeatedly described my symptoms and hypothesis. In 1997, I received a pacemaker-defibrillator for complete block in the electrical system in my heart with associated potential life-threatening ventricular tachycardia. It was during this time that I was recruited by Glaxo-Wellcome, then the second-largest pharmaceutical company in the world, to lead translational research and the development team for lapatinib (marketed under the proprietary name Tykerb). At the time, lapatinib was being studied as a treatment for cancers of the colon, prostate and lung; our laboratory and early phase clinical work made it clear that Tykerb should instead be developed as a treatment for breast cancer.
So – six weeks after the birth of my daughter Celeste – our family moved to North Carolina. Shortly after, I learned that my heart was functioning at 10 percent of normal capacity, which was devastating. Very few people, other than my wife and cardiologist, knew how fragile my situation was; rather than rolling over and feeling depressed, I decided to live every day to its fullest, continuing to work for the next eight years maintaining a highly active lab focusing on targeted cancer therapies at GlaxoSmithKline.
It was an exciting but also very stressful time for me. I felt strongly that lapatinib would be instrumental in treating breast cancer, which wasn’t a popular move since it meant changing the direction of the development plan. Moreover, our research indicated that women with inflammatory breast cancer (IBC) might be particularly responsive to lapatinib. Although IBC remains one of the most aggressive, and deadly forms of breast cancer, IBC patients have historically been excluded from clinical trials of new therapies. I felt passionately that we should conduct a clinical trial looking at the effectiveness of lapatinib in women with HER2+ IBC, particularly after several women with HER2+ IBC had dramatic responses in the early phase clinical trials. Despite critics, including those in academia who advised GSK that following my advice would be crazy, that it would take at least a decade to complete an IBC trial because of the infrequent nature of IBC, I moved ahead anyway, traveling the world with a team of three to put together an international consortium of top IBC investigators from Tunisia, Israel, Belgium, Canada, etc. We completed the study in 10 months, and then expanded the study to become one of the largest clinical trials dedicated solely to women with IBC. As we had predicted, responses to lapatinib therapy alone in women with HER2+ IBC were highly impressive, and opened the door to subsequent clinical trials of targeted therapies in IBC.
In September 2006 I returned to fulltime academia, accepting a position at Duke to direct their effort to make basic science applicable in the care of cancer patients. I continued to have heart issues, and after going through a near-death episode, I was having 15-20 episodes of ventricular tachycardia a day by June of 2009. On July 17, I had deteriorated to the point where, lying in an ICU bed at a major medical center, I was told I had 72 hours to live without a heart transplant. I was transferred to Duke University Medical Center where the cardiac team performed a heart transplant. I was back at work three months later, and continue to lead the research team – as well as coaching Celeste’s soccer team.
I am grateful for so many things in my life, and Komen is high on the list. To me, Komen is synonymous with pushing boundaries to improve the lives of people through research, screening, treatment and education.
Being chosen as a Komen Scholar was transformative. Komen’s commitment to research allows individuals to continue their important work; it’s a priceless relationship to me, and I’m incredibly indebted to be able to continue my passion. I’m very grateful that Komen recognizes the urgency, and that they can proudly say, “We’ve got a portfolio of research, and we’re not leaving anyone behind.” I’m also grateful that Komen has invested in helping people with IBC – those without access to technologies.
My current Komen-funded research builds on previous lapatinib studies. My team and I have identified molecular mechanisms that cause tumors to become resistant to lapatinib as well as identifying, in advance, those tumors that will become resistant. We will develop combinations of targeted therapeutic strategies to overcome or prevent this resistance from happening. In addition, we are excited about our work developing non-invasive imaging technologies to molecularly characterize breast cancers – primary and metastatic sites – which may be amenable to a “theranostic” approach (combined diagnostic and therapeutic all in one), which I believe is critical to the future of personalizing the treatment of breast cancer based on information from all sites of disease active in a patient.
And yet – especially having gone through this 12-year ordeal – there’s a dichotomy. It took years for me to receive a Lyme disease diagnosis, when I had suspected it from the beginning. I’m concerned that the more we develop virtual testing and call it personalized medicine, the less personalized treatment patients are receiving since doctors will be spending less time listening as opposed to ordering tests. So it becomes even more important for you, the patient, to take control of your life.
I don’t care who your doctor is, or what diploma’s on the wall – never give up the power that is “you.” Trust me on this one, I have a white coat and stethoscope, and I am humble enough to admit that I don’t have all the answers. You know your body better than anyone else. I encourage patients to never give away their power to anyone – doctors included – to tell them what’s wrong with their bodies. Your gut instinct is there for a reason; follow it rather than necessarily letting someone tell you otherwise.
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