Missing link: Caroline’s search for answers becomes a mission to connect and advocate

Caroline Abi-Khattar found connection with other breast cancer survivors and a mission to pay it forward.

Caroline Abi-Khattar recalls the water pipe bursting from an apartment above hers, flooding her D.C. home.

“My friends, my sister packed up my entire life and moved me into a storage unit,” she recalls. “Okay, the universe is telling me, get out of here and move back home.”

Having just received a diagnosis of early-stage breast cancer days after her 37th birthday, Caroline was at a crossroads over what treatment to pursue for her unusual subtype of breast cancer.

Caroline’s breast cancer showed a rare combination of estrogen-receptor (ER) negative, progesterone-receptor (PR) minimally positive, and HER2-negative. Her medical opinions differed: Should she be treated like someone with solely triple-negative breast cancer, or someone with elements of hormone-positive disease, and what combination of treatments should she undertake?

In search of clarity, she met with oncologists near her childhood home in Philadelphia. It was Angela DeMichele, MD, MSCE, at Penn Medicine who readily addressed Caroline’s every question and backed up her recommendations with a deep understanding of the science.

When the ceiling opened up, her path forward became clear: to pursue treatment in Philadelphia with that doctor. This turning was the first of many decisive acts Caroline would take toward finding answers, connection, and her voice as an advocate for people with breast cancer, especially young women.

When her apartment flooded – and family and friends came to help her pack up her life in a day – Caroline took it as a sign to pursue treatment with a physician near her childhood home in Philadelphia.

A different kind of homecoming

While she had a soft place to land in Philadelphia with her large extended family around and friends to support her, she still felt lost without someone who understood the mountain of decisions she would have to make — and quickly.

“What I was missing in those early days was a connection into the breast cancer world,” she says. “I was being offered choices of different potential treatment paths. I was being offered clinical trials. I had to make a lot of decisions very quickly.”

When she was nearly through chemo, she found a group of survivors with the Young Survival Coalition who met in-person. She was struck by the feeling of finding people who understood, at last, and with whom she could talk through her decisions. This group also shared the unique challenges of being a young adult with cancer, with disruptions that linger well beyond a flooded apartment.

“Your doctors can present you with great options, but you have to choose what you're doing, and it's everything from teeny, tiny decisions to huge ones.”

Caroline had the support of a large extended family, including her nephews, pictured with her during treatment (left) and in 2024.

What’s missing becomes a mission

Through her young survivor group, Caroline became close friends with Diane, who was involved in scientific advocacy and patient advocacy.

Diane encouraged her to join a number of formal advocacy trainings and attend scientific conferences, leading to a better grasp of how scientific knowledge could benefit not just herself but other people with breast cancer.

Caroline’s friend Diane inspired her to pursue science advocacy and participate in clinical trials.

Through her training, Caroline understood she was considered high risk for recurrence, and that meant making different decisions about her treatment after surgery.

She had only had a partial response to chemotherapy, and learning about dormant tumor cells and residual disease led her to make more aggressive choices with the support of her oncologist, a leader in this field of research.

Caroline and Diane joined clinical trials, which for many people in treatment can be a scary thought. “The biggest hurdle is that agreeing to participate in a clinical trial is sort of admitting to yourself, I am at high risk,” she says.

Eventually, Caroline began leading her support group. Over time, referrals from around her community of people navigating their own treatment decisions compelled her to give back with the knowledge she gained through her trainings and through her treatment journey.

“I felt that I had something to offer to other survivors by virtue of understanding what was happening in and being involved in the world of breast cancer science. The role of talking to other patients and mentorship is super important to me.”

She dedicated herself to advocating for others who need an informed and supportive ear, just as she did.

“I always had in the back of my mind that initial experience — I didn't have anybody to talk to, and I had to navigate a lot,” she says. “I didn't want other people to be in that space.”

Caroline used her scientific knowledge to dive into patient advocacy at major scientific conferences and through legislation.

Knowledge is power

Ultimately, despite the clinical trials and trying every treatment available to her, Diane passed away from metastatic breast cancer. Caroline carries forward her legacy by mentoring other people in treatment, advising research institutions on research design and patient participation in clinical trials, and using her corporate legal background to advocate for the breast cancer community.

She finds particular meaning in moments where she meets people who are considering participating in a research study and helping to demystify what that means.

“Later on, that trial will be presented as a successful trial at a major scientific conference, and that just gets me so excited,” she says. “And I get to tell them, ‘Look, you did it. You were brave enough to do this, and you helped yourself, and you helped other women.’”

When she had the chance to honor her oncologist, an honoree at the Living Beyond Breast Cancer Butterfly Ball in 2022, she was struck by the event’s spirit of celebrating survivorship.

“I knew from the people I had met how different everyone’s needs are as they go through treatment and survivorship,” Caroline says. “Whether it’s the LBBC Fund, information about treatments, educational resources, or the Conference on Metastatic Breast Cancer, LBBC offers so many resources to support people in making that first connection and looking for answers about what they’re going through.”

Now as a board member of LBBC, as well as in her roles on the patient advocate board at Penn Medicine’s 2-PREVENT Breast Cancer Translational Center of Excellence and a reviewer for the Department of Defense Breast Cancer Research Program, she can extend her support to even more people impacted by breast cancer and ensure their voices help shape the future of research.

“Talking with as many people as I have over these last several years of diagnosis, treatment, survivorship, and advocacy, I understand that there are not always great outcomes at the end,” Caroline says. “But that just pushes me to want to support this community even more to move the needle forward as much as possible.”

Caroline’s large extended family continues to support her in her advocacy work on behalf of the breast cancer community.