Most people I speak with are shocked to learn that the medical community does not track or report breast cancer recurrence in any formal or systematic way. The initial diagnosis of cancer — including factors like stage, age, prognostic profile (estrogen receptor, progesterone receptor, and HER2 status) and basic treatment information — are tracked through hospital-based cancer registries that report to the Surveillance, Epidemiology and End Results (SEER) Program. But if a person diagnosed with stage 2 breast cancer in 2007 has a breast cancer recurrence elsewhere in the body (metastasis) in 2021 that is not reported. What happens if a person is diagnosed with a new breast tumor in the same breast or in the opposite breast? Will that get reported? The answer is: It depends on the physician. Some would label those as new primary cancers, which get reported, and some would label those as recurrences, which do not get reported.

Clearly, this is a problem. And it’s one that breast cancer patient advocates have been working hard to draw attention to. In 2015, a metastatic breast cancer patient advocate named Katherine O’Brien wrote a Change.org petition with support from numerous groups to pressure the National Cancer Institute (NCI) to begin counting metastatic recurrences. Over the next few years, the petition collected about 12,000 signatures, and at the 2020 San Antonio Breast Cancer Symposium we saw the first glimpse of the pilot program the NCI created to respond to this need, The Breast Cancer Recurrence Project. Funded by an NCI-Department of Energy collaboration, the Project will determine how to create the most comprehensive and representative data set of breast cancer recurrences, with the ultimate goal of adding this data to the SEER Program.

In the poster presentation “Learning from breast cancer clinical trials how to capture recurrence estimates for North American cancer registries: A systematic review,” presented at the 2020 San Antonio meeting, the NCI’s Esmeralda Ramirez-Pena, PhD, MPH showed the scope of the problem and explained the project’s goals. The presentation notes that current data about the risk of recurrence is largely collected from clinical trials. However, trials historically only track 5 or 10 years of recurrence data, subsequently underreporting late recurrences. Furthermore, with only about 5% of persons diagnosed with breast cancer being treated on a clinical trial, the data globally lacks diversity.

The Dr. Susan Love Foundation for Breast Cancer Research applauds this effort — and the breast cancer patient advocates who made it happen. Hats off to you, Katherine! It is vital that we have a comprehensive understanding of the nature of breast cancer recurrence and know how many women are living with metastatic disease. There is an adage “we measure what matters.” This effort shows metastatic breast cancer patients that their lives, experiences, and treatments matter. May patient voices always be a catalyst for change.

If you are looking for a chance to participate in research or have your voice counted, you can always sign up to join the Love Research Army and keep your ear (or email as it were) to the ground to hear about interesting new ways to contribute to advancing breast cancer research.

 

 

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