We often hear about progress in common tumors such as breast and colon cancer, but are making slower progress in many rare malignancies. There are many reasons for this discrepancy, including lower levels of research funding, less public awareness and, importantly, difficulties in finding enough patients with a given rare tumor to perform rigorous scientific studies.
Adenocarcinomas of the small bowel are an excellent example of this, as there are only an estimated 2,000 cases a year compared to the 150,000 cases of colon cancer diagnosed per year. However, concerted efforts by Dr. Michael Overman in the Department of Gastrointestinal Medical Oncology and Dr. George Chang in the Department of Surgical Oncology at M. D. Anderson have resulted in a better understanding of the disease.
An article written by Amy Marcus, a Pulitzer Prize winning reporter at The Wall Street Journal, which accompanies Dr. Overman's study gives one perspective on how to move forward (Journal of Clinical Oncology, Vol 27, No 16 (June 1), 2009: pp. 2575-2577). She suggests that the key component to moving research forward in rare malignancies is the existence of active patient advocacy for the disease. Indeed, she offers examples of how individual patients advocated for (and participated in) research of their rare tumors and the progress they are able to make.
How, then, can we make progress in these rare diseases? To paraphrase Margaret Mead: Never doubt that a small group of patients, scientists and advocates can change the world of rare malignancies. Indeed, that is the only thing that ever has.
Scott Kopetz, M.D., Assistant Professor, Department of Gastrointestinal Medical Oncology, from ASCO 2009