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Reflections: Dikla Benzeevi on Living with Advanced Breast Cancer

Patient Advocate and Advanced Breast Cancer Survivor

I was diagnosed five years ago. I am going through my third recurrence of metastatic breast cancer.

"Survivorship" is a relatively new term for women with metastatic disease, because in the past we did not "survive." We struggled, we suffered and we died. Now many of us continue with our normal lives and pursue plans for the future. We want to be on the survivor "ship" as long as possible, living our lives to our fullest potential and joy.

Every time a new metastasis is discovered in my body, I wonder if I will survive it this time. The fears that concern me the most are the fear of pain, the fear of disability and the fear of death. Will the new treatments kill the disease as the last ones did? Will they cause severe or mild side effects? Will I survive? Once a new treatment protocol starts working, those fears subside and I focus on living my life to its full potential.

The minute I was diagnosed with advanced breast cancer, I wanted to meet long-term survivors. I was not interested in five-year or ten-year survival rates. I am in my 30s, and my interest is in 50-year survival rates.

This desire led me to seek out the Metastatic Breast Cancer Network and the Young Survival Coalition, where I met 20-plus-year survivors of advanced disease. It was inspiring to know that surviving that long is possible, and it motivated me to keep fighting the disease in all ways possible.

I have known many women who did not survive. In the last year, 13 women I knew passed away, all under age 45. I consider that a shame, vibrant and beautiful women who fought the disease and yet the cancer killed them. It angers me, and it makes me ever more passionate to advocate for a cure, for new targeted therapies and for more extensive support and resource networks.

Advanced breast cancer is a hard disease to cope with, not just physically but mentally. The possibility of death and disability is constant, with no filters or screens. We all know we have to die sometime. But for most, it is off on the horizon. As women with advanced breast cancer, we are forever confronted by our own mortality.

The media focuses on women cured of their cancer, women with early-stage disease who overcome this challenge with strength and dignity. No attention is paid to those of us who must deal with breast cancer for the rest of our lives. The media message makes me feel I have failed. Why was I not cured like those other women?

The media must pay more attention to us and depict us realistically. Our diagnoses are varied, from a single isolated metastasis that needs minimal treatment to multiple organ involvement and constant chemotherapy. Women of all ages are diagnosed. Therapies should be designed not just to kill the cancer but also to provide the best quality of life.

We represent the worst fears of early-stage survivors. People do not know how to respond to someone who will never finish treatment, who will always be fighting. We need to educate the public. There should be a nationwide search for very long-term survivors of advanced breast cancer who are living a good quality of life. Our stories can inspire all those struggling with metastasis.

Our voice needs to be acknowledged and heard. I believe that the more support and resources we provide each other, the less scary advanced breast cancer will become.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

This article was found in the following newsletter:

Insight, Fall 2007

This double issue of Insight features a 12-page report on the state breast cancer, plus a timeline of milestones and columns from more than 20 women and advocates reflecting on the impact of breast cancer on their lives. Other articles explore predictive and prognostic tests that could help you make treatment decisions, methods to better communicate with your loved ones and a profile of a woman who says LBBC's Cis B. Golder Grant helped to improve her quality of life.

View entire newsletter

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