She is among the 1 in 10 patients with metastatic disease who live 15 or more years
| Nov 19, 2012
I just talked with a friend—let’s call her Janet—who is battling recurrent metastatic breast cancer. She is among the 1 in 10 patients with metastatic disease who live 15 or more years. It has been a remarkable journey since her initial diagnosis with early-stage breast cancer and first course of chemotherapy at age 26…26 years ago. As recently as five years ago she was at death’s door a second time, in the hospital with her family gathered around expecting death in a matter of days. Her doctor then started a new course of therapy. Miraculously she responded immediately. She returned to work full-time just months later – she is a high-level executive who has made huge contributions to her company and their customers – and has been going strong ever since.
Maybe Janet’s story is more common than we might think. Read about another amazing long-term survivor of metastatic breast cancer (who passed earlier this year). Encouraging stories such as these bring up age-old questions: who, what, why, how and when.
Who will respond? We still don’t know enough to answer this question with confidence, but great progress has been made. There was no certainty that Janet would respond during her previous brush with death. For all the knowledge we have gained regarding biomarkers and tumor-specific therapies, their effect in a given case is not certain. Does that mean that we should not try? Of course not! But it comes with a cost.
What course of treatment should be undertaken? Treatment guidelines for many tumor types are well defined and supported by empirical evidence; however, those guidelines and patient-specific courses of therapy don’t always work. It is then that physicians are left to make treatment decisions based more on experience and nuance. Medicine remains an art as well as a science. Should physicians be allowed to continue to practice the art of medicine in response to a failure in its science? Well, of course, but it comes with a cost.
Why should we do more than standard treatment and palliative care when there are uncertain outcomes and the pursuit of those uncertain outcomes is increasingly expensive? Medical “miracles” are often the unexpected result of physicians assembling the equivalent of a complex puzzle with critical pieces missing. It is the power of the human mind to work around the missing pieces that brings new knowledge and hope. But stepping outside the box comes with a cost.
Then comes the most difficult question: How do we allocate resources? And that leads to the final question: When do we stop trying to sustain life and instead make the remaining life the most comfortable and satisfying under the circumstances? It would have been easy to treat Janet with palliative care during her last serious flare and let her pass. Yet, from a societal standpoint her last five years have been among her most productive, but it comes with a cost.
Janet’s story and thousands like hers across the disease spectrum are stories of hope, determination, optimism, support and good medicine. Her experiences lead to questions for physicians, healthcare providers, ethicists, spiritual leaders and politicians to help answer. What we—you and I— cannot do is abdicate our role in that process. Our role is to engage with them on behalf of the Janets of the world, knowing that tomorrow it could be a loved one or it could be us in that position. It is relatively easy to deal with these questions in an impersonal, empirical way rather than deal with them while looking into the face of hope and fear, answering them one person at a time. Let’s each stay engaged in addressing these questions to make sure that the courage and success of the Janets out there, whom we learn so much from, don’t get lost by allowing “easy” impersonal answers that may result unnecessarily in early losses and the loss of what we can learn from Janet and so many like her.