Julia K. Levine: Advocating for Lobular Breast Cancer Research 

In January 2013, Julia K. Levine, a 25-year veteran in the film and television industry, noticed what looked like bruises on her left breast. Her doctor recommended a mammogram, which found a suspicious area. After additional tests, Julia was diagnosed with metastatic lobular breast cancer. Julia had no family history of cancer, so it came as a shock that she had a 7-centimeter tumor in her breast, and that the cancer had spread to her bones.

For the first 5 years of her ongoing treatment, Julia felt good and was able to continue working. But as her treatments and the side effects became more difficult, she had to step away from her demanding career. “Cancer diagnosis was affecting everything in my life, including career and finances,” Julia recalled. And while she was close with her son, who was in high school at the time of her diagnosis, she also had to make a tough decision about how much he should know. “He was old enough to know about breast cancer. But I wanted him to maintain a normal life, so I was careful about how much detail to share.”

Julia’s first treatment was with an antiestrogen drug, anastrozole, to shrink the tumor, followed by surgery to remove it. But, as she later learned, lobular breast cancer does not have distinct lumps, making it difficult to surgically remove with clear margins. Over the next 6 years, Julia underwent two more surgeries, followed by radiation therapy in 2019. Around the same time, she started taking a new therapeutic, palbociclib with fulvestrant. Unfortunately, after about a year the cancer that had metastasized to her bones started to progress. At that point, she began an oral chemotherapeutic, capecitabine, which controlled her disease for 2½ years.

In 2022, Julia participated in a phase Ib clinical trial at UCLA for an investigational drug. Even though it did not work for her, the treatment worked for others, so Julia was happy to contribute to science in some way. Julia knows it is important to participate in clinical trials. It was even more meaningful for her because there are not many clinical trials for patients with lobular breast cancer and bone-only metastatic disease as they do not often qualify for clinical trials.

“I am grateful for the people who came before me. This is the way new drugs get approved, and we need new drugs to stay alive. We need to be more inclusive and diverse in age, race, ethnicity, and in subtypes of cancer, because everybody’s different,” Julia emphasized.

For the past 5 months, Julia has been taking capivasertib, which was approved by the US Food and Drug Administration in November 2023. Julia had been anxiously awaiting that approval because her previous treatment, everolimus, came with significant side effects. Even though she has experienced some challenging gastrointestinal side effects and has lowered the dose with capivasertib and has rising levels of some tumor markers, her scans are showing reduction of her bone and bone marrow metastases.

“I’m feeling pretty good. I have more energy than I’ve had in the past year. I do physical therapy and yoga, and I like walking on the beach. I’m designing a new back porch. I do some artwork, and I read all the time. I play tambourine in my husband’s band, which is fun. I love to dance, and I like to work in my garden,” Julia said.

Julia loves doing research. She did it previously for her job, and following her cancer diagnosis, she researched metastatic lobular breast cancer, attended scientific conferences, met with scientists and researchers, and bonded with patients and patient advocates. Her passion to stay informed about the progress being made against the disease led Julia and some scientists and other patient advocates to found the Lobular Breast Cancer Alliance in 2016; LBCA has become a go-to resource for patients with lobular breast cancer.

“It’s so important for people with a disease that’s not well known to find accurate information about it, meet other people who have the same diagnosis, and/or are on the same drugs you are on. It’s lonely when you have a disease and you don’t know anybody else who has that disease,” Julia said.

When she was initially diagnosed with metastatic cancer, Julia wasn’t sure she would see significant milestones. Now she will celebrate her 30th wedding anniversary with a trip to Europe. And she is grateful to witness her son, now 26, graduate college, get a good job, and have a long-time girlfriend. Julia has also become a fierce advocate for more funding for cancer research and for allowing patients with metastatic lobular breast cancer to enroll in clinical trials. She is a co-author on academic publications, routinely participates in scientific conferences as a speaker, and is helping promote the first Lobular Breast Cancer Awareness Day on October 15, 2024.

“I can’t stress enough the importance of funding for metastatic cancer. For example, metastatic breast cancer only garners about 13 percent of all breast cancer research, and lobular breast cancer is only about 1 percent. Research and clinical trials save lives and metastatic cancer kills, so we need to do more,” Julia emphasized. And for people interested in patient advocacy, Julia’s advice is apt: “Do as much evidence-based research as possible, go to conferences, meet other advocates, and don’t be afraid to talk to scientists. Most importantly, advocate for yourself.”