One of the most perplexing aspects of cancer treatment is predicting whether a specific therapy will be effective for a given patient. Many of us know cancer patients who have outlived their prognosis, and/or have responded to a drug for an unusually long time. Conversely, other patients do not fare well at all.

Most patients fall somewhere between these extremes. Yet patients at either end of the spectrum may hold the key to making medicine even more precise by providing valuable information about exactly what it is that makes them exceptional.

This subject is particularly important to me because I have metastatic breast cancer that cannot be cured. Yet my unusually positive response to treatment – and how long I’ve survived — make me a true outlier. If the factors that led to my exceptional response could be leveraged for others, it’s possible that outcomes for cancer patients could improve.

At present there is no “industry standard” for classifying atypical patients. These categories have been suggested by the Metastatic Breast Cancer Alliance:

  1. Exceptional responders: patients exhibiting an unusually favorable response to a specific treatment protocol compared with other patients on the same protocol.
  2. Rapid progressors: patients displaying an unusually poor response, or no response, to a specific treatment protocol compared with other patients on the same protocol.
  3. Exceptional survivors: patients who have far outlived their prognosis for reasons that are not fully understood, regardless of whether they had an atypical response to a specific therapy. Exceptional survivors may be considered to have an atypical response to their disease by virtue of substantially outliving their prognosis.

The last decade has witnessed an increasing emphasis on identifying and targeting genetic mutations in patients’ tumors. Yet patients are far more complex than the sum of their DNA. Atypical patient responses may not only be due to mutations, but also to other medical conditions and the medications taken for them, supplements and lifestyle factors, the use of complementary practices such as acupuncture and meditation, and the interaction among these components. Studying these dynamics becomes increasingly important for defining groups of patients who are likely to achieve success on a given treatment, as well as those who may achieve no benefit whatsoever.

I fall into the exceptional responder and exceptional survivor categories. By the time I was diagnosed in 2011 with metastatic disease after four years of misdiagnosis, the outlook was grim. Tumors speckled a lung and a liter of malignant fluid was drained in the hospital. I was short of breath, completely hoarse, and had Horner’s syndrome, cancer-related nerve damage that meant a drooping eyelid and inability to perspire on one side of the face.

Thankfully, I responded to conventional therapy and am alive more than seven years later despite the fact that the average prognosis for MBC patients is merely three years. In an effort to improve my odds of survival I altered my diet, added a naturopathic oncologist to my medical team, exercised regularly, and maintained a low body mass index. It is unclear whether these factors contributed to my relative longevity in addition to my standard treatment, which is why people like me need to be studied. To this end, I’ve enrolled in two investigational studies of atypical MBC patients which I hope will help extend the lives of future patients.

Further initiatives are needed to advance the investigation of atypical patient responses. In addition to launching studies directly targeting atypical patients, clinical trials of experimental therapies should be enhanced to identify and specifically study exceptional responders, rapid progressors, and exceptional survivors with regard to treatment outcomes. In both clinical trials and clinical practice, standardized questionnaires should be leveraged to gather information about conventional treatments, complementary practices, genetic abnormalities, and other illnesses to identify trends and correlations. The resulting data should be shared on a common platform to allow researchers to detect patterns and test hypotheses.

With greater understanding of patient outcomes, personalized medicine could one day transform all terminally ill patients into exceptional survivors who can manage their disease as a chronic condition.

Anne Loeser is a metastatic breast cancer patient who was diagnosed with early stage breast cancer in 1993. In 2011, MBC was found in her lung, pleura, and pericardium. In response to eight years of misdiagnosis, Anne began research that culminated in a comprehensive guide about MBC treatments, cutting-edge findings, and symptom mitigation that she continually updates and has forwarded on a complimentary basis to more than 3,000 patients and caregivers worldwide. In February 2019, she published “The Insider’s Guide to Metastatic Breast Cancer” in paperback and eBook formats on Amazon and launched the website www.insidersguidembc.com. A member of the Metastatic Breast Cancer Alliance and Komen Greater NYC, Anne lives with her husband and parrot in Salt Lake City, Utah. This guest column appears through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than a million patients and caregivers.