Breast cancer is the most common cancer among people born of the female sex. It impacts more than 1.5 million individuals around the world each year. According to the latest figures from the American Cancer Society, 1 in 8 females living in the United States will be diagnosed with breast cancer in their lifetime.
Breast cancer occurs when cells in the breast divide and grow without their normal control. It’s reported that 50 to 75 percent of breast cancers begin in the milk ducts, while only 10 to 15 percent begin in the lobules and a few begin in other breast tissue.
Although many types of breast cancer can cause a lump in the breast, not all do. Many breast cancers are found with screening mammograms that can detect cancers at an earlier stage, often before they can be felt and before symptoms develop.
Although breast cancer has generally been referred to as a single disease, evidence suggests there are multiple subtypes of breast cancer that occur at different rates in different groups, respond to different kinds of treatments, and have varied, long-term survival rates. The warning signs of breast cancer aren’t the same for everyone, either.
From 2006 to 2015, breast cancer death rates declined annually, a drop that’s been attributed to both improvements in treatment and early detection. Current research continues to uncover lifestyle factors and habits, as well as inherited genes that affect breast cancer risk.
These three organizations help people with breast cancer to track down hard-to-find resources, while providing a community for those at all stages of diagnosis.
When Rochelle Shoretz, a 28-year-old Jewish mother, was diagnosed with breast cancer in 2001, she had many offers to help with meals and to transport her sons to after-school programs.
What she really wanted, though, was to speak to another young mom like herself, who could help her navigate discussing difficult topics with her children — from the potential hair loss due to chemotherapy to what preparing for the High Holidays would be like, knowing she was facing a life-threatening illness.
Rochelle found information about her disease in many places — but she couldn’t find resources to help her live with breast cancer as a young Jewish woman. She wanted a place for young Jewish individuals to turn to during their darkest hours, no matter where they lived, and to find “sisters” to share their cancer journey with.
So, she founded Sharsheret.
“Sharsheret is the Jewish community’s response to breast cancer and the only national organization addressing the unique concerns of Jewish women and families facing breast cancer and ovarian cancer,” said Adina Fleischmann, the director of Support Programs at Sharsheret.
“That is the inspiration that fuels us to do the work we do every day.”
About 1 in 40 people of Ashkenazi Jewish descent carries a mutation in the BRCA1 or BRCA2 gene, about 10 times that of the general population. This mutation increases the likelihood of developing breast, ovarian, and other related cancers.
Sharsheret educates both the cancer and Jewish communities about that risk, and provides a continuum of culturally-relevant support for those at risk of developing cancer, those diagnosed with cancer, and those grappling with issues of recurrence or survivorship.
“What keeps us going is that by educating the Jewish community about their increased hereditary breast and ovarian cancer, and supporting women and families facing breast and ovarian cancer with our 12 national programs, we are literally saving lives,” Fleischmann said.
The idea for BreastCancerTrials.org (BCT) was conceived in 1998 by Joan Schreiner and Joanne Tyler, two people with breast cancer who wanted to learn about clinical trials but weren’t encouraged by their doctors.
BCT is a nonprofit service that encourages individuals affected by breast cancer to consider clinical trials as a routine option for care. They help people find trials personalized to their individual diagnosis and treatment history.
You can also use BCT to browse more than 600 studies by searching for keywords or selecting a category of trials, such as immunotherapy. BCT staff write up all the trial summaries so they’re comprehensible to people across a range of literacy levels.
Program director Elly Cohen joined the BCT team in 1999, soon after Joan and Joanne brought their idea to the University of California, San Francisco. Cohen had been recently treated for early stage breast cancer, and she was drawn to BCT — both from her personal experience with breast cancer and as someone whose mother died from the disease.
“This perspective made me acutely aware of how trials conducted between our respective diagnoses provided me with treatment options that were not available for my mother and most likely contributed to my 18-year survival,” Cohen said.
In 2014, BCT developed Metastatic Trial Search, a matching tool designed specifically for people with metastatic breast cancer. The tool was developed in collaboration with five breast cancer advocacy organizations and is currently embedded on 13 advocacy group’s websites that provide easy access to trials within a person’s trusted community.
In 2016, BCT received over 130,000 visits.
“What keeps me going is my commitment to helping patients gain access to experimental, potentially life-saving therapies and raising their personal awareness to the fact that every patient who participates in a trial helps to accelerate the pace of critical breast cancer research,” Cohen said.
In 2006, at just 23 years old, Lindsay Avner became the youngest woman in the country to undergo a risk-reducing double mastectomy.
Having lost her grandmother and great-grandmother to breast cancer before she was born, and after watching her mother fight both breast and ovarian cancer when she was only 12, Lindsay underwent genetic testing at the age of 22.
The test revealed she carried a mutation on the BRCA1 gene — a mutation that significantly increased her risk of breast and ovarian cancers. While evaluating her options, Lindsay was confronted by a lack of resources for individuals like her: those who didn’t have breast or ovarian cancer, but wanted to be proactive with their health.
In 2007, Lindsay founded Bright Pink, a national nonprofit whose mission is to save lives from breast and ovarian cancer by empowering women to live proactively at a young age. Bright Pink’s programs deliver breast and ovarian health education to women in their daily lives and healthcare providers in their daily practice.
“I meet people on a daily basis who share stories of women close to them whose lives could have been saved had they had access to the education and resources Bright Pink provides,” said Katie Thiede, CEO of Bright Pink. “Since our founding, we’ve empowered nearly one million women to be proactive advocates for their breast and ovarian health — and we are so proud of that impact.”
Bright Pink created a risk assessment tool called Assess Your Risk. The 5-minute quiz asks 19 questions about family health, personal health history, and lifestyle factors before providing a personalized baseline risk for breast and ovarian cancer.
Jen Thomas is a journalist and media strategist based in San Francisco. When she’s not dreaming of new places to visit and photograph, she can be found around the Bay Area struggling to wrangle her blind Jack Russell Terrier or looking lost because she insists on walking everywhere. Jen is also a competitive Ultimate Frisbee player, a decent rock climber, a lapsed runner, and an aspiring aerial performer.