Q&A With Dr. Stanley Rockson, Founder of the National Breast Cancer Lymphedema Registry

December 9, 2014 at 4:44 am Leave a comment

Rockson

Dr. Stanley Rockson

Lymphedema —a specific form of swelling of the arm or hand that is often painful—is a common long-term side effect of breast cancer treatments. Stanley G. Rockson, MD, the Director of the Center for Lymphatic and Venous Disorders at Stanford University Medical Center in California, established the National Breast Cancer Lymphedema Registry to learn more about why some women develop lymphedema and others do not. BCT spoke with Dr. Rockson about what the registry can teach researchers and how it can help breast cancer patients.

Q: Why did you decide to develop this registry?
A: Breast cancer survivorship is so phenomenally good, and there are many women who can hope to live out their natural lifespan. If you’ve beaten a life threatening disease and then develop lymphedema, which affects your appearance and sense of wellbeing, it affects your quality of life.  So it’s important to figure out the best way to minimize the problem and optimize detection and treatment. That was our motivation for starting this registry and we hope that it will allow us to make an impact on this common problem.

If we can determine that certain strategies reduce the intensity of lymphedema or the amount of care that is required, that would be an impetus for doctors to adopt those strategies. Also, by asking questions about the treatments received, we hope to be able to tease out the impact of breast cancer from the impact of lymphedema. Currently, all of this is very poorly understood.

Q: What is the advantage of collecting this information in a registry?
A: A registry is not as statistically rigorous as a prospective trial, but because ours is web-based it does allow us to escape the limitations of geographic locale—we have registrants from every state and every region in the U.S. This is useful because there are big geographic differences in the availability of resources for the treatment of lymphedema. The registry allows us to capture data from the broadest possible perspectives and touch the largest number of lives.

Q: Is there just one survey?
A: No, it is a longitudinal study. We check in on women quarterly for the first year after surgery, because that’s when they are at the highest risk for developing lymphedema—and we continue to follow them after that.

Q: How many women have signed up?
A: We started about three years ago and now have between 400 and 500 participants. We’d like to have at least 1,000 women enrolled. I know that there are a lot of survivors who like to think about how to help themselves and help others and this is a wonderful cost-free and risk-free way to participate in clinical research.

Q: Do you need to be newly diagnosed?
A: No. We are not limiting anyone from being part of the registry. We have some women who already have lymphedema, and their being part of the study will help shed light on how lymphedema is currently managed. We value all the data we can collect from anyone who has had breast cancer.

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Entry filed under: Breast Cancer Health Research. Tags: , , , .

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