Fourteen years ago, Maxx Schube was in the carpool lane at Davis Academy in Sandy Springs waiting to pick up her children when she felt a lump in her breast and another one on her chest.
Doctors told her not to worry, the lumps were nothing. But she insisted on a biopsy. The biopsy came back positive for cancer. She then also insisted on being tested for the breast cancer susceptibility gene (BRCA) – as an Ashkenazi Jew, she knew she was at a higher risk of having the gene.
That test also came back positive for the BRCA 1 gene mutation, meaning she was likely to get either ovarian or breast cancer before age 70. She underwent treatment and is now a 13-year survivor of breast cancer.
As a mother with daughters and a son, she wanted them to be tested for the gene as well. Her two daughters, Rochelle and Alana, were positive; her son was negative. Now, her daughter, Alana, 24, is in treatment for a recurrence of breast cancer after undergoing just last year a double mastectomy and chemotherapy.
“Never in my wildest dreams did I expect my daughter to have breast cancer in college,” Maxx Schube, 55, said. “This is not an old woman disease anymore.”
Rochelle Schube, 29, is a “previvor” who chose to take action after an irregular MRI by having a double mastectomy and reconstructive surgery in June before any diagnosis of cancer.
When someone tests positive for BRCA, they are encouraged to be tested for cancer every six months. Rochelle said twice a year she would be on an emotional rollercoaster, wondering, “Is this my time?”
“It gets emotional. Every six months you’re worried. And especially after my sister was diagnosed … this was not something she was given the chance to do,” Rochelle Schube said. “After they found something with my MRI, I got scared and decided to have surgery to remove all doubt.”
Because the Schube women speak openly about BRCA and their journeys with breast cancer, they are being honored at the Greater Atlanta Hadassah’s Breast Strokes – The Big Reveal event on Feb. 20 at The Stave Room at American Spirit Works.
The event raises funds for breast cancer research and genetic research programs at the Hadassah Medical Organization in Jerusalem and for breast cancer education, advocacy and prevention in the U.S.
“We wanted to be a wake-up call to the younger generation,” Maxx Schube said. “I can be mad this has happened to us or I can believe this is happening to us so we can let other people know [about BRCA], educate other people and be there for others to lean on.”
Rochelle Schube also tries to see the positive despite the harrowing journeys she and her mother and sister are on.
“This happens to whole families. It’s not fun. If I can find a silver lining in all this, it’s that we as a family have come together and support each other. We are empowering each other in a powerless situation,” she said.
Maxx Schube praises Alana’s fight against cancer, saying “she rocked it” during last year’s surgery and chemo.
“As a mom, to watch your daughter go through this is a nightmare. She has an amazing attitude,” she said. “She is ready to fight this.”
Maxx Schube said because she and Alana discovered their lumps themselves, they were initially told there was nothing wrong with them.
“More people need to not be afraid to speak up and insist they check it out,” she said.
When Rochelle Schube decided to take preventative care through surgery, her insurance company at first denied her claim. She took on the insurance company and “went from being scared to fighting for the thing I was scared to do.”
Rochelle Schube now volunteers with Bright Pink, an organization helping young women dealing with breast and ovarian cancer. She facilitates a monthly support group and works individually with women.
“When I found out I had [BRCA], I felt very alone. Now I have a community,” she said.
Rochelle Schube stresses that having a preventative double mastectomy – a surgery made famous when actress Angelina Jolie came out publicly as having the surgery after she learned she carries the BRCA 1 gene – is not a decision made lightly.
“People have asked, ‘What else are you cutting off your body?’ And that’s not what this is about,” she said.
“I will forever remember when my sister and mom were diagnosed with cancer, going to chemotherapy … it’s heartbreaking,” she said. “I didn’t want to be the next one.”
And her decision to speak out about her journey is simply a way to help others. Too many myths and misconceptions exist that stigmatize women who decide to have preventative surgeries, she added. People have even asked her if she was just unhappy with her breasts.
“Mastectomy is not the same as augmentation. It’s painful and it’s different,” she said.
“Somebody needs to take a stand. And what’s the alternative to not speaking out? To internalize this and let others stumble? No.”