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


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.


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

Terry Arnold: Why I Joined a Registry Study

terry.arnoldTerry Arnold is participating in the Inflammatory Breast Cancer Registry at the M. D. Anderson Cancer Center, in Houston. This registry is collecting blood and tissue samples and treatment information from patients with inflammatory breast cancer (IBC). The samples are banked at the
M. D. Anderson Cancer Center for use in future research studies. BCT spoke with Arnold about her experience.

Q: When were you diagnosed with IBC?
A: I was diagnosed in the summer of 2007, at age 49. My breast became red and swollen and puffed up. My doctor thought I had an infection and put me on antibiotics. I was misdiagnosed five times over a period of four months. I live in Houston and ultimately I ended up at M. D. Anderson, where I was diagnosed with triple negative IBC in that breast and a triple negative tumor in the other breast.

Q: How did you learn about the IBC registry?
A: The researchers told me about the registry and I enrolled because I wanted to do anything I could to help researchers learn more about IBC. I had no history of breast cancer in my family, I had breastfed five children and I was not overweight. That was something I had hoped would reduce my risk of breast cancer. I was careful about my weight because we have a history of diabetes in my family. I didn’t think breast cancer was in my future and I wanted my doctors to figure out why this had happened to me so it would not happen to anyone else.

Q: What was involved?
A: The registry requires a blood sample, so they did double withdrawals of blood. It was no big deal. Then I completed a lot of surveys that asked about alcohol, food, where I lived, my lifestyle—all kinds of questions. There was never any pressure. They were almost apologetic about how many questions there were.

Q: Have you encouraged other women to get involved in clinical trials?
A:  All the time. Women often put their families first and worry about extra time or travel required for a trial, but they need to put themselves at the head of the line. Some of us are standing on the shoulders of giants, of others who took part in trials that helped us, and taking part is a way we can pay it forward.

December 9, 2014 at 4:41 am 5 comments

New Breast Cancer Trials for Week of 7/14/14 and 7/21/14

New trials posted to BCT this week:

July 23, 2014 at 10:28 pm Leave a comment

New Breast Cancer Trials for June 2014

New trials posted to BCT in June 2014:

June 25, 2014 at 4:48 pm Leave a comment

New Breast Cancer Trials for Week of 6/3/14

New trials posted to BCT this week:

June 5, 2014 at 11:47 pm Leave a comment

New Breast Cancer Trials for Week of 5/19/14

New trials posted to BCT this week:

May 21, 2014 at 8:29 pm Leave a comment

Seek And You Shall Find

magnify glassTry Out the New BCT Search Box
For some time, BCT users have been telling us that what they’d most like to see on BCT is a search box. Well, I’m excited to let you know that the BCT Search Box is now live on our website. You’ll find it right where you need it most: At the top of our See All Trials page.

We set up the BCT search feature so that you can search on one or two terms. If you search on two terms, you can connect them with either “AND” or “OR.” A search on hormone therapy AND Femara, for example, will show you studies that include both terms. But if you select hormone therapy OR Femara you will see studies that include either hormone therapy or Femara or both.

We hope the new BCT Search Box will help you find what you need on BCT faster. We welcome your feedback. And now that search is here, please let us know what you think our next improvement should be.

May 14, 2014 at 8:15 pm Leave a comment

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