Young & Metastatic

Young women with metastatic breast cancer have their own unique issues, says social worker Roz Kleban, facilitator of support groups at Memorial Sloan-Kettering Cancer Center. “The younger women are more tentative about a group,” Kleban says, “because while they’re well, they are working and taking care of their children. And when that is no longer the case, they are very sick.”

Young women want to get treatment and go back to their lives, she says, adding that women in their 60s are winding down careers and visiting grandchildren. “At 35 you don’t want to give up your career. You are either looking for a partner or have one—or you have children to take care of.”

Or, she says, if they don’t already have children, they probably won’t. So it takes away their plans for the future. “The young person’s life is stopped in its tracks,” she says. Young women want to know how long they will live and what their quality of life will be. At the base of every question is, “How long will I be here?”

Randi Rosenberg, who was 40 when she learned she had metastatic breast cancer, says she is still getting used to living with metastatic disease and often finds different coping skills are required to go with the flow despite not knowing what is behind any given door.

Diagnosed initially in 1998 when she was 32, Rosenberg had a scan in 2006 that revealed the cancer had returned in her bones. Her daughter, Alexandra, was 2.

Rosenberg looks like a teenager at the door of her New York City apartment. A petite 5-foot-1 and dressed in jeans and a T-shirt, Rosenberg doesn’t look old enough to be out of high school, much less to be a 10-year cancer survivor and the co-founder and past president of the Young Survival Coalition, a nonprofit for young women with breast cancer. Indeed, in the past decade Rosenberg has also helped create the Metastatic Breast Cancer Network and the LIVESTRONG Young Adult Alliance while running her own marketing company, marrying, divorcing, falling in love, having a baby, and then dealing with breast cancer again.

Rosenberg, whose cancer is stable with hormonal treatment, is articulate and thoughtful about her diagnosis and how to balance her advocacy work with motherhood and cancer.

I look at Alexandra and for a split second think she is going to grow up without me,” Rosenberg says. “It forces, in a positive way, looking at the hard stuff when you are well.

The distraction of creating resources for the community served as a source of healing for almost 10 years. However, her stage 4 recurrence has forced her to re-evaluate the volume of volunteer commitments and a constant entrenchment in the world of cancer.

“Good days are when I cross a lot of stuff off my to-do list, and I roll around with my 3-year-old and play music and giggle and have tickle fights.”

Rosenberg says it’s about finding a rhythm and language that enable her and her partner, Matthew, to maintain a healthy relationship and still be fantastic parents.

The formality of the interview is eclipsed when I get a call from my 22-year-old daughter, Kirtley, who lives in New York City. At the end of the call, Rosenberg can overhear Kirtley’s parting comment, “I can’t wait to see you,” and says quietly that a call like that is what she is aiming for—to live long enough to have that moment with Alexandra.

“I look at Alexandra and for a split second think she is going to grow up without me,” Rosenberg says. “It forces, in a positive way, looking at the hard stuff when you are well. It takes away the fear of the unknown when you address it—to turn and face it, it loses its power.”

Just then, Alexandra explodes into the room with babysitter in tow. Rosenberg scoops her up for a hug that carries with it the weight of an unknown future.