Lori Marx-Rubiner and AnneMarie Ciccarella met on social media and grew close through their cancer research advocacy.
By Sue Rochman
Editor’s Note: While this issue of Cancer Today was being completed, we learned that Lori Marx-Rubiner had died of her illness. Before her death, she and AnneMarie Ciccarella asked that we publish the story of their friendship and patient advocacy partnership
as it was originally written.
AnneMarie Ciccarella sat inside her home in Long Beach, New York, and got ready to flip a coin. It was a Saturday afternoon, she had a lot on her mind and more than 48 hours of Memorial Day weekend 2017 stretched out before her. From her home in Los Angeles, Lori Marx-Rubiner texted Ciccarella one word, “Heads.” Ciccarella tossed a quarter in the air. It landed heads up on the carpet. Luck had sealed the deal: She would spend the rest of the weekend in L.A. with her best friend.
Welcome to the crazy, passionate world of two widely loved and admired breast cancer research advocates. While living on opposite sides of the country, they have each other’s backs. In conversation, their sentences intersect and their words overlap with a shared understanding. There is no question, says Ciccarella. “Together, we are better.”
A Social Media Connection
On Monday evenings, the Twittersphere is home to a unique one-hour conversation that flows under the hashtag #BCSM
(for Breast Cancer Social Media). Neither Ciccarella, 61, nor Marx-Rubiner, 51, had expected to find the person they’d been missing in their life on Twitter, but when the #BCSM chat launched
in July 2011, they did.
Tweeting with the same hashtag evolved into emails, phone calls and FaceTime. Ten months after those initial tweets, in May 2012, the two met in person for the first time at Dulles International Airport in Chantilly, Virginia. They had synced their arrivals for the National Breast Cancer Coalition (NBCC) Annual Advocate Training Conference in Washington, D.C., where they would be live-tweeting to the #BCSM community. “We clicked immediately,” says Marx-Rubiner. “It’s like having a best friend from forever ago, but you forget that they don’t know everything.”
The two women initially connected in part because each had been diagnosed with lobular breast cancer, Marx-Rubiner in 2002 and Ciccarella in 2006. While most breast tumors start in the breast ducts, lobular breast cancer starts in the breast lobules. It makes up only about 10 percent of all breast cancer diagnoses, so it’s easy to be part of a group where no one else has that type of tumor. Both were also drawn to #BCSM because it focused on evidence-based education and support for anyone affected by breast cancer. “The #BCSM hashtag gave us a vehicle,” says Marx-Rubiner. “For both of us, it was about science and how to move research forward and how to help people know how to turn to the research.”
Creating a CancerBase
A data-sharing project helps patients understand their options. Better Together
In a video, Lori Marx-Rubiner and AnneMarie Ciccarella discuss their friendship and advocacy.
Neither expected to be drawn to science. When Marx-Rubiner was diagnosed at age 35, she says, “I knew nothing about breast cancer. But I had a 3-year-old son and I knew I was way too young and that this
was unacceptable.” Her tumor was hormone sensitive, and she was treated with chemotherapy given before surgery, bilateral mastectomy and five years of tamoxifen to reduce the risk of the cancer returning. At the time, it was more common for doctors to recommend routine scans and blood tests to check for cancer recurrence. Marx-Rubiner’s blood markers rose over a two-year period, but her scans were clear. Then in August 2011, six weeks before her son Zachary’s bar mitzvah, scans showed the cancer had spread to her bones. Unacceptable took on a new meaning.
When Ciccarella received her breast cancer diagnosis in 2006 at age 49, she already knew the basics: Her mother had been diagnosed with stage II breast cancer in 1987, also at age 49. Ciccarella’s treatment included a bilateral mastectomy, eight rounds of chemotherapy, and close to 10 years of hormone therapy. She had her ovaries removed to further reduce her risk of a cancer recurrence. In August 2007, while Ciccarella was undergoing treatment, her mother was diagnosed with a second primary tumor in her other breast. When she learned her mother had metastatic disease in January 2013, the first thing she did was text Marx-Rubiner, who replied that she was ready to get on a plane and fly to New York if needed.
Over the past six years, the two friends have propelled one another forward in the research advocacy arena. Marx-Rubiner got her start in 2010 through Project LEAD, a science course for breast cancer advocates run by the NBCC. After that, she was invited to be a patient reviewer for the Department of Defense Breast Cancer Research Program. The experience of reviewing scientists’ research proposals led her to nominate Ciccarella for the program. “Lori pushed me to do it,” says Ciccarella. “I was like, ‘I’m not qualified’—she was way ahead of me—and she said, ‘You’re going to have to trust me.’ ” Ciccarella was selected to be part of the program and sat on a review panel in October 2012. “That changed my life,” she says. “I realized research was really where I wanted to be focused.”
Two months later, as research advocates, the duo attended the 2012 San Antonio Breast Cancer Symposium (SABCS). The five-day conference draws researchers, doctors, other health care professionals and patient advocates from more than 90 countries. Both had received scholarships for the Alamo Breast Cancer Foundation’s (ABCF) Patient Advocate Program, which is held in conjunction with SABCS and includes presentations by leading researchers designed to help advocates better understand the science being presented at the meeting.
ABCF board member Sandi Stanford, a 22-year survivor of stage III breast cancer, mentored Ciccarella and Marx-Rubiner at that meeting. “They were both always one of the first to ask questions,” says Stanford, “and they asked intelligent questions that showed they really knew what they were talking about.” Since that meeting, Stanford’s friendship with the women—whom she calls “the twins”—has grown. “I think of them as two of my kids,” says Stanford, who recently turned 73. “They call me their Margarita Mom because San Antonio is known for their margaritas.”