A few of us from 23andMe attended the 6th Annual Conference for Women Living with Metastatic Breast Cancer two weekends ago in Philadelphia. This national conference is put on by a patient advocacy organization called Living Beyond Breast Cancer (LBBC) that empowers women affected by breast cancer to live longer, healthier lives.
The conference provided a toolbox of information for women fighting metastatic breast cancer — everything from treatment options to day-to-day coping to facing end-of-life issues. Metastatic breast cancer is a cancer that spreads from the breast to other parts of the body including the bones or liver.
It was an awe-inspiring event and we saw firsthand how brave, informed, and strong the metastatic breast cancer community is.
Continue reading for some conference highlights…
Order kit, spit, and take surveys from the comfort of your home…
23andMe attended LBBC’s metastatic breast cancer conference to spread the word and recruit women to the web-based InVite study. InVite is a collaborative effort between 23andMe and Genentech to understand how genes influence response to bevacizumab (also known as Avastin®) in the treatment of metastatic breast cancer. Women who were on bevacizumab for metastatic breast cancer at any point in 2010 or 2011 are eligible for the study. Enroll at https://www.23andme.com/invite-study/ or email email@example.com for more information.
Potential findings of this study may help to explain why some women respond well to this drug while others suffer adverse side effects. Although this drug has FDA clearance for a number of cancers, the approval for metastatic breast cancer was removed in November of 2011.
Patient and Physician Stories
The conference started with an inspiring testimonial by Pat Biedermann who has been fighting stage IV breast cancer for a number of years. She described how one of her first signs of metastasis was a cracking sound in her spine as she teed off on a golf course. Pat’s “tricks and tips” on living with the disease can be found on LBBC’s blog.
The next part of the conference featured a panel of physician-scientists that included Drs. Adam M. Brufsky, Julie R. Gralow, Harold A. Harvey, and Beth Overmoyer. They offered expertise on treatment options and gave an update on the latest in bench-to-bedside research on metastatic breast cancer.
The patient audience asked the panelists a variety of questions, for instance how do you decide when it’s time to a stop a treatment because of side effects? They also asked about genetic testing of tumors and expressed frustration over accessing clinical trials. (One individual said that finding a clinical trial that worked for her was like finding a needle in haystack.)
Clinical trials can be difficult for patients to access — the trial might be located far from where they live and the website that advertises them is largely geared towards physicians, containing technical language and eligibility criteria that can be hard to understand.
Personal Genetics and Drug Response
There was some discussion of the role of genetics in breast cancer. Although breast cancer can be strongly influenced by genetics — mutations in the BRCA genes are associated with a lifetime risk of about 50-60% — most cases are “sporadic”, meaning that the patient has no blood relative affected by the disease.
Breast cancer also comes in different forms and it’s becoming clear that it’s important to find out which kind you have because it can impact the course of treatment. For instance, many therapies aren’t effective in treating triple-negative breast cancer, which by definition is estrogen receptor-negative, progesterone receptor-negative, and HER2-negative. Since triple-negative cancers don’t display the receptors that most drugs target, it can be challenging to find a drug that will work for them.
The panelists also discussed how genetics can sometimes explain why some people respond well to a drug whereas others may experience serious side effects. This was of particular interest to 23andMe because we not only offer our customers reports on how their genetics might influence responses to different drugs but also perform research to understand these genetic responses. Our research into this area includes antidepressants, commonly used medications, and now bevacizumab in breast cancer as part of the InVite study (see sidebar).
Living beyond breast cancer pretty much sums up the goal of the conference attended by 23andMe employees including InVite Project Lead Dr. Kimberly Barnholt. “It was inspiring to meet such knowledgeable and empowered women at the LBBC conference,” she said. “We are excited to partner with this community of active and passionate individuals to explore innovative approaches to research that will hopefully lead to better treatments and maybe even an eventual cure for breast cancer.”