Location: Dallas, Texas
Julie Shrell first learned she had ovarian cancer when she woke up from her October 2010 hysterectomy. She had not been worried going into the surgery because both her gynecologist as well as the gynecologic oncologist to whom she had been referred thought her symptoms were most likely a case of endometriosis, and the surgery was just erring on the side of caution. But Julie woke up to the news that the cysts in her ovaries were cancerous and that she had Stage IIIC ovarian cancer that had spread to her omentum.
Ovarian cancer had not been on Julie’s radar, but breast cancer was. Her paternal grandmother had twice had breast cancer, once in her late 40s and again in her 80s. Julie had filled out a family history questionnaire and even asked about getting tested for the BRCA mutation (one in 40 people of Ashkenazi Jewish descent have the genetic mutation as compared to one in 400 in the general population) but she was told she was not at risk. When she was diagnosed with ovarian cancer, Julie insisted on getting the BRCA testing and learned she had the BRCA-1 mutation. Had she known of her mutation back when she had first asked for testing, Julie could have known about her heightened risk for both ovarian and breast cancer and taken preventive measures.
The day after her surgery, Julie met with a medical oncologist to discuss what would happen next and was told that she would get a port and proceed with chemo. Julie asked if she was going to lose her hair and she was told that yes, she would. “I couldn’t think of what else to ask,” Julies says. “It was all so overwhelming.” She underwent three rounds of IVtaxol and carboplatin, then had a CT. After that she had 3 rounds of interperitoneal taxol cisplatin and then asked for a fourth round because she had tolerated them well. Her CA-125 was normal and a CT scan showed that there was no longer any evidence of cancer.
Once her treatment was completed, Julie turned to being an advocate for the importance of genetic testing. Her twin daughters, Simone and Marissa, now 26, were tested and both are positive for the mutation. Julie feels incredibly grateful to have defied the odds and to still be here for her children (she also has a son, Gavin, now 21) and she is determined to pay it forward. She joined with two other ovarian cancer survivors to start a cycling benefit at the Dallas Jewish Community Center. Each woman had heard about Ovarian Cycle, an Atlanta-based 6-hour spin cycling fundraiser, and thought, “We need to do this.” They had hoped to have 50 riders and raise $100,000, but their inaugural fundraiser brought in 300 riders and raised $300,000.
Following the success of the first fundraising indoor cyclingride, Julie and her partners (Helen Gardner and Jill Bach) brought in a fourth partner, Lynn Lentscher, and decided to start their own foundation. In 2012, they formed Be the Difference Foundation, and they have expanded beyond Dallas to also hold their own Wheel to Surviveevents in Houston, Austin and Lubbock, Texas, and also Denver, Colorado, the San Francisco Bay area and San Diego in California and Boca, Florida. They have raised 2.2 million dollars, donating it to research and clinical trials at MD Anderson, Sloan Kettering, New York University, the University of Pennsylvania and the Clearity Foundation. They also provide funds to the Lazarex Foundation to help women get to ovarian cancer clinical trials around the country, to the Mary Crowley Cancer Research Center in Dallas to ensure clinical trials are always available and to a researcher at UT Southwestern who is looking for an effective screening for ovarian cancer.
They recently hired an executive director to help them grow the foundation and be more strategic. “We want to see how else we can raise money,” Julie says, “but we are also focused on raising awareness.” They want to provide more information about symptoms and risksof ovarian cancer and how to navigate the diagnosis. “We want to be a sourcethat we wish had been available when we were diagnosed,” Julie says.
Julie did not ride a spin bike before she had cancer, but she now trains for six weeks prior to each Wheel to Survive event sponsored byBe the Difference Foundation. One of her daughters is now a spin instructor and the other has convinced her employer, WeWork, to be a sponsor of the foundation. Julie’s husband rides the entire six hours (rather than being part of a relay team) and Helen’s husband is now on the board. (Sadly, Helen died in 2014, but the foundation is part of her legacy.) “It is a family labor of love,” Julie says. “The survivors are the ones who drive it, but the people who love us are the ones who support it.”
Julie has now been cancer-free for eight years, with no recurrences. She still marvels at how such a terrible and scary diagnosis yielded something that does so much good. “The journey has taken on a life of its own,” she says. When she was first diagnosed, Julie’s biggest fear was for her kids. When people would ask them how they were doing they would respond saying that as long as their mom was okay, then they were too. Watching their mom cycle away, and spearhead a foundation that helps so many, must be the greatest reassurance there is that their mom is definitely doing okay.