Most people receiving a diagnosis of Stage 4 breast cancer understandably tend to withdraw into themselves, explore the options involved with treatment — chemotherapy, radiation, surgery — and simply hope for the best.
But most people aren’t Rebecca Timlin-Scalera.
Since being diagnosed in September 2015, the Fairfield-based neuropsychologist has become an activist, establishing The Cancer Couch Foundation to fund research exclusively for metastatic breast cancer, metastatic being the term for when the disease spreads to other parts of the body.
“When I got the Stage 4 diagnosis, I was of course devastated,” she said. “But a few weeks later we did another round of tests, and I was upgraded to Stage 3C” — a still serious condition where the cancer cells have usually not spread to more distant sites in the body, but are present in several lymph nodes.
“It didn’t seem to make much sense,” Timlin-Scalera said. “I’ve always led a healthy lifestyle, and I work in the health care field, in a hospital. But I didn’t know the facts about cancer.”
When still under the Stage 4 cloud, Timlin-Scalera began researching and connecting to breast cancer communities online. She found that one in eight women will be diagnosed with invasive breast cancer in their lifetime, with 6 to 10 percent diagnosed at Stage 4 and the remainder diagnosed “early” at stages 1 to 3. Thirty percent of those diagnosed with early stage breast cancer are eventually rediagnosed with metastatic breast cancer — Stage 4, for which there is no cure.
About 40,000 people die each year from metastatic breast cancer in the U.S., similar to those who died annually of AIDS at the height of that crisis. But while that disease has been brought under control to some degree through medication, “The same isn’t true of breast cancer. The cancer cells are so clever, so adept at getting around everything you can throw at them.”
Timlin-Scalera took heart from President Barack Obama’s announcement during his 2016 State of the Union address of the establishment of the National Cancer Moonshot Initiative to accelerate cancer research. The initiative — led by Vice President Joe Biden — aims to make more therapies available to more patients, while also improving efforts at preventing cancer and detecting it at an early stage.
What truly struck her, she said, was her discovery that only about 7 percent of breast cancer research funding goes to studying treatment for metastatic breast cancer — leaving that significant community feeling underserved or even ignored.
As a result, Timlin-Scalera started The Cancer Couch Foundation, named to reflect her private practice in Norwalk, which will present researchers at Memorial Sloan Kettering Cancer Center in New York City and Dana-Farber Cancer Institute in Boston with the proceeds it raises through its thecancercouch.com website and a number of fundraising events; the institutions have promised to match every dollar donated. As The Cancer Couch is an entirely volunteer-based organization, Timlin-Scalera said 100 percent of its income will be donated, probably in 6-month increments starting later this year.
“The research work just isn’t being done,” Timlin-Scalera said. Together with other like-minded groups such as Met Up — named for metastatic cancer patients — her organization is aiming to raise that 7 percent for research to 30 percent.
The Cancer Couch’s scheduled events include a June 17 “Last Day of School!” fundraiser at Westport’s Saugatuck Sweets, in which teams of students kindergarten to twelfth grade will compete to see who can eat the most ice cream in five minutes; the four-person teams are required to raise at least $200 in pledges to qualify.
In addition, The Cancer Couch is hosting a Sept. 10 benefit concert featuring The English Beat (one of Timlin-Scalera’s favorite groups) at The Warehouse in Fairfield.
“Now that I got out of the hospital a couple of weeks ago,” she said, “I’m committed to putting together more special events.”