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Fall 2014
In This Issue
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Living Beyond Breast Cancer
April 11 & 12, 2015

Philadelphia, PA 





Hair To Stay!
All women are invited to participate in a quick and anonymous survey about a new device designed to significantly reduce chemotherapy-induced hair loss. The company is hoping for FDA approval following a successful UCSF Breast Care Center trial and seeks input from all US women to prepare for the product launch. 


Free Teleconferences and Webinars


Living Beyond Breast Cancer

Dec. 19, 2014   

12:00pm- 1:00pm EST


Please Stop Staring At My Breasts: The Sexualization of Breast Cancer

Breast Cancer Action
Dec. 10, 2014 at 10 am PST/1 pm EST

Dec. 11, 2014 at 3 pm PST/ 6 pm EST 

New to BreastCancerTrials.org?

We welcome patients, long-term survivors, or those at risk to consider clinical trials as a routine option for care. Explore our Matching Tool and QuickView Browser to find a trial that's right for you.

From the Director:

Throughout the year, your feedback
has continually helped us improve BreastCancerTrials.org. By responding to our surveys, you have helped us identify ways to improve our website. You have also helped us better understand obstacles to trial participation.
    In one recent survey, women who matched to one or more trials told us their greatest barrier to participation was the need to travel to the research site. This issue of our newsletter discusses one type of study that frequently doesn't require any travel: cancer registries.
    We hope you will take the time during this busy holiday season to review our list of cancer registries. If you do, you will see that there is one registry on our list that is open to all cancer survivors, providing an opportunity for everyone to participate.
    By taking part in a cancer registry, or any other breast cancer study, you are giving a gift to other cancer patients--the gift of information that can help fuel breast cancer advances. And that's a gift that we all need.
Wishing you a Happy Holiday Season.
--Elly Cohen, BCT Director, and the entire BCT Team

Cancer Registry Trials: At  Least One
for Everyone
All of the Registry studies on BCT can be found  here.

When thinking about breast cancer research, clinical trials investigating new drug treatments are often the first thing that comes to mind. But there is another type of research study that tends to get much less attention: breast cancer registry studies.

Most people are familiar with the concept of a registry, either having created one for a wedding or new baby or selected a gift from one for a bride or groom. These types of registries are well-organized lists of the gifts a person is hoping to receive. A registry study is similar: It is a well-organized set of questions. But instead of giving a gift, you give answers to the researchers' questions. In some cases, you also provide a blood or tumor sample that researchers can use in the future. This can help them identify biological markers that might, for example, provide information about a tumor's aggressiveness or the types of treatments it will respond to. The blood sample might also be used to identify new genetic mutations that increase or decrease breast cancer risk.

Read more


RocksonQ & A with Dr. Stanley Rockson


Stanley Rockson, MD 
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.



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?

ArnoldWhy I Joined a Registry Study: Q&A with Terry Arnold
Terry Arnold

Terry 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 in joining the registry study?

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Editor/Writer: Sue Rochman
Design: Claudia Fung