Dikla Benzeevi: Honoring 15 Years of Advocacy
On August 19, 2002, Dikla Benzeevi got some unexpected news: she was diagnosed with breast cancer. She was 32 years old.
Though she had lost both of her parents to cancer, the possibility that she could be diagnosed herself at such a young age just wasn’t on her radar. Even still, with the help of her older brothers, she dove in, making innumerable appointments with specialists across Los Angeles, where she lived.
As the days and appointments ticked by, more details about her diagnosis emerged. The cancer was triple-positive. A scan revealed a suspicious nodule on her spine, but it was deemed a cyst, placing Dikla at stage III.
At that time drugs like Herceptin were not yet FDA-approved for someone in Dikla’s position, but she had heard about Herceptin and pushed until she found a doctor who agreed to treat her with it. A powerful self-advocate from the start, she sought out multiple opinions from across the U.S. and around the world to determine the best options for her treatment.
But the one thing she frustratingly could not find were other young women like her. She asked at doctors’ offices and hospitals to be connected, and reached out to support organizations. “I called so many hotlines, but no one had anyone close to my age,” she remembers.
By early 2003, Dikla was in the middle of treatment and “starving to meet other women my age.” She heard about a YSC conference taking place in Pennsylvania, and was determined to go even though the timing wasn’t great -- she was recovering from her recent lumpectomy, and also receiving chemotherapy, which had suppressed her immune system.
“It wasn’t the best situation, but I had this great need. I had to do it,” Dikla remembers. That need powered her through getting cleared to travel from her medical team, making the arrangements to attend the conference, and flying cross-country alone.
When she arrived at the conference, she was glad she’d pushed to go. “It was the best experience ever -- the camaraderie, the support...what a relief being around people who understood (my) concerns!”
While at the conference, Dikla met two other young women from L.A. also dealing with breast cancer. One was being treated at her hospital. She was happy to meet them, but also frustrated: why hadn’t anyone connected them?
“After that I started reaching out everywhere…(When I was diagnosed) I felt isolated and alone. Not finding an established group for young women with breast cancer, specifically in L.A., upset and frustrated me. I didn't want anyone else to feel alone when it was unnecessary. We existed in L.A., but no one was bringing us together. So I said ‘I’m going to do that.’”
Honor Dikla and her 15 years of advocacy by sharing her story with 15 friends.
Over the next year, Dikla began creating her own informal support network, growing an email list of other young women on the west coast, eventually building a list of over a thousand. By the time the next YSC conference came around, Dikla was ready: she organized travel for groups of young women to attend the conference; helping them apply for travel grants, coordinating tickets so they wouldn’t have to fly alone.
As she continued her outreach and advocacy, Dikla began experiencing discomfort, and then increasingly debilitating pain, in her back. She raised it with her oncologist; she went for scans. The spot on her spine that had been deemed a cyst two years prior now made its true self known: it was metastasis – stage 4 breast cancer, and it had badly damaged one of her vertebrae. She was immediately confined to a chin to waist back brace, was nearly completely disabled and started looking into a difficult surgery to stabilize her spine and reduce the risk of paralysis.
Dikla shares on the importance of making plans and connecting with others.
When the next conference came around, it was crucial to Dikla that she not only attend, but also coordinate travel for other young women as she had done before, despite her new challenges. “We were a motley crew -- I was in my brace, another woman had had hip replacement, some of us were bald...” But they got to the conference, and that was important.
Dikla organized conference travel for young women for another three years, and continues her advocacy work today, currently running the largest metastatic breast cancer-focused Facebook group, and acting as a powerful voice on the realities of living with metastatic disease, while also sharing stories of hope.
It has been 15 years since Dikla was first diagnosed with breast cancer as a young woman. In that time, she’s dealt with bone and lung metastasis, surgeries to breast, spine and lung, had over a dozen different kinds of treatment, including a clinical trial she’s participating in now.
“This is why I go through treatments and research: to be able to take advantage of opportunities and meet people I wouldn’t have met in my other life. That’s what makes life fabulous, these connections.”
In honor of the 15 years Dikla has spent as a mets thriver and advocate, YSC has established a special fund for travel grants to help women with metastatic breast cancer to attend YSC’s Summit and Symposium. You can join us in honoring Dikla and her commitment to advocacy by making a gift of $15 or more.
