Working mother Elizabeth Levene, 46, has been in various phases of cancer treatment for three-and-a-half years.
The first time was March 2016. Just having weaned her second child and three months after having taken a new job as an executive director of the North Carolina-based Helps Education Fund, she’d gone for a routine mammogram, only to learn, following biopsy, that she had breast cancer that had already spread to her lymph nodes.
“It’s one of those situations where you think it’s the worst thing that could possibly be happening at that time in my life. I had been working for 17 years to be an executive director and this was my moment,” said Levene, whose resume includes management roles at various domestic violence, child abuse and neglect, and education nonprofits. “I had to totally re-do, kind of reprogram myself around what matters and what’s valuable.”
She’d proceed with chemotherapy treatments, followed by radiation, a mastectomy of her right breast and removal of the affected lymph nodes. Then she’d begin Herceptin/Perjeta infusions, which she’d continue, according to protocol, for a year.
Levene’s cancer was positive for ER/PR (estrogen and progesterone receptors) and HER2. Both Herceptin (chemical name: trastuzumab) and Perjeta (chemical name: pertuzumab) are targeted therapies used to treat HER2-positive breast cancer. They work by attaching themselves to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals.
These targeted therapy drugs seemed to really work to keep her cancer from progressing, while she took them, but three months after she completed the treatment course, in September 2017, she found a lump in her other breast.
With the new invasive cancer, her oncologist Kimberly Blackwell, MD, advised another round of chemotherapy and radiation, followed by a mastectomy — repeating the same treatment for the left breast that she’d had for her right.
Both times, the chemotherapy made her so sick she ended up in the hospital. She lost her hair.
“It was bad, bad, bad,” Levene said. “I thought I was going to die.”
After chemo, she restarted Herceptin/Perjeta infusions. A daily Arimidex (chemical name: anastrazole) pill, an aromatase inhibitor that limits the amount of estrogen the body produces; regular shots of Lupron (chemical name: leuprolide), a drug for premenopausal women to stop the ovaries from making the estrogen that helps breast cancer grow; and Zometa (chemical name: zolendroic acid), a bisphosphonate drug for treating bone disease in patients with cancer, were also part of the plan. Her cancer was under attack from all sides.
Then, in October 2018, Levene learned that her breast cancer had figured out a way around the drugs. It had metastasized to her brain.
A New Phase
About 15 to 20% of all brain mets diagnoses are found to have originated in the breast. Levene didn’t have any brain tumor symptoms, but fortunately, her new breast oncologist, P. Kelly Marcom, MD, was in the habit of advising annual MRIs for all his metastatic patients even if they were not symptomatic. That’s how the five tumors in her brain were discovered.
She was referred for consultation with radiation oncologist John Kirkpatrick, MD, PhD, the radiation director for the Duke Center for Brain and Spine Metastasis at DCI (DCBSM). He would perform a stereotactic radiosurgery (SRS) procedure — a high-tech non-surgical therapy that delivers precisely-targeted high-dose radiation to the tumors, while preserving nearby healthy tissue. The SRS was a success.
A few months later, breast oncologist Carey Anders, MD — a skilled clinician whose primary research focus is brain metastasis arising from breast cancer and medical director of the DCBSM — joined Levene’s care team.
At this point, Levene was getting MRIs of her brain and PET scans of the rest of her body every three months to keep an eye out for any cancer recurrences.
When a small tumor was found in her brain in June 2019, Kirkpatrick “zapped” that tumor like he did the others. Three months later, in September 2019, her brain scan was totally clear.
A little less worried, and with virtually no side effects from treatment — no nausea, no fatigue, no hair loss — Levene proceeded to do things she’d been putting on hold like visiting her brother in South Carolina, the state where she grew up.
“Herceptin/Perjeta tells my cells to not turn into cancer and right now my cells are listening,” said Levene during an infusion session a couple days before Thanksgiving 2019.
Despite the extra mental, physical and emotional challenges that living with brain mets entails, Levene managed to find a steady work/life balance. In fact, business at her non-profit took off. The number of Helps Education Fund employees grew to 15 with staff in Durham and Charlotte. She was running the non-profit, which engages teachers, parents, and volunteers to improve student learning, with a close-to $1 million budget.
For Levene, continuing to work full-time (often from Duke Cancer Center) was a way to survive through it all. As long as she could write a grant, even if badly written, answer a few emails a day, or even Zoom from her infusion chair into virtual meetings with colleagues, she found a way.
When she had to be at Duke Cancer Center for appointments or treatments, she’d have someone drop her off in the morning and pick her up at the end of the day. No matter how long she had to be there, she’d make a day of it — settling in to work during her infusions, or while waiting for a clinic appointment, and then continuing to work in the cancer center’s Patient Resource Center or her special spot on the third floor.
“If it had been any other environment that wasn’t this center, I don’t know if my non-profit would have survived,” said Levene. “The resources at Duke are amazing and the cancer center is amazing. They have wifi here. Free coffee. They deliver snacks. They have seats that have desks. They have everything set up so that you can work."
She also took advantage of other supportive resources like medical family therapists, psychologists, social workers, and the free haircuts offered in the Belk Boutique. Last summer, her son, nine, started going to Camp Kessem, a no-cost camp for children impacted by a parent’s cancer — a resource she learned about through DCI. Her six-year-old daughter will join him next year.
Levene said she “built a community” in her “second home.”
“When I was diagnosed with brain mets, one of the things I thought about was that all of the normal breast cancer people are afraid of me now… Who do I go to?” said Levene, who’d joined Facebook groups, attended general cancer support groups, and made friends with patients with “curable” breast cancer up until that point. “I ended up becoming friends with a man with stage 4 lung cancer. We started having coffee once every three weeks and all of the sudden I felt like I could relate to him. People who have other kinds of cancers don’t always have that immediate rapport, but it’s different for those with stage 4.”
She also met metastatic breast cancer thrivers like herself being treated at Duke, like Pam Kohl with the N.C. Triangle to the Coast Affiliate of the Susan G. Komen Foundation, “who’s been fantastic and added to my group,” and Katrina Cooke, a member of DCI’s Oncology Patient Advisory Council, whom she first met when they both spoke at an NCTC Komen Young Researchers Roundtable Breakfast on metastatic breast cancer last fall.
“I wasn’t really scared of cancer until I was stage 4,” admitted Levene. “Even when I was first diagnosed with cancer, even though it had spread to my lymph nodes, it wasn’t metastatic. I knew there was a beginning, middle, and end. And even the second time I was like, “Well there’s going to be an end to this and I can put it behind me.” It wasn’t until I learned about the brain mets that I realized, “Well, there isn’t going to be an end to this. More of a living with it.” I feel like those people who have Crohn’s or Lyme disease. It’s like the same shit I’m going through — a chronic disease — always on some kind of medicine.”
A Time to Heal
In early December 2019, Levene started experiencing bad headaches and spent the weekend in the hospital. It turned out she had hydrocephalus; an accumulation of cerebrospinal fluid in her brain. She started taking steroids to keep her headaches at bay through the holidays. She said she had “a fantastic holiday” and no headaches through January.
But on February 1, as she was being weaned off the steroids, she had a seizure and spent another weekend in the hospital.
She emailed her staff, recapping her history with breast cancer and explaining she’d be having brain surgery for the first time and would be out of the office for three weeks recovering.
“Let's get through this week and the next...and then one for good measure and healing,” she said, concluding a long message.
On February 6, she underwent a craniectomy — a bilateral resection of two cerebellar lesions suspected to be a side-effect of radiation necrosis (an accumulation of dead tissue caused by previous radiation treatments). Neurosurgeon Peter Fecci, MD, PhD, the overall director of the DCBSM, opened up her skull and removed the masses. When the tissue was examined by Pathology, tumor cells were found in the right cerebellar lesion. This required a five-day course of hypo-fractionated SRS to the area — performed by Kirkpatrick during the first week of March this year.
Levene’s care team, meanwhile, switched her systemic therapy to Kadcyla (chemical name: T-DM1 or trastuzumab emtansine ), which, unlike Herceptin/Perjeta, is able to cross the blood-brain barrier.
On March 9, Levene spent the entire day at Duke Cancer Center for appointments related to her new normal.
“There was a lot of waiting in the waiting room, but you know, I brought my movies,” Levene said, describing, on March 10, what life has been like since brain surgery. “Normally I’m working, but it was kinda nice not to.”
The post-op anti-seizure medicine, she explained, had reduced her cognition, making it too hard to read and respond to emails and texts. Now she writes everything down in her notebook to make sure she doesn’t forget anything.
Levene was able to take the months of February and March off from work. As executive director, she’s the one who first created the leave policy, which includes 25 days PTO plus unpaid family/medical leave. She said hadn’t imagined she’d be relying so heavily on it.
With the new anti-seizure medicine, Levene may have lost her ability, temporarily, to work, but she doesn’t want to lose her independence.
So, when her mother offered to take her to Target earlier that day she jumped at the chance.
“Boom, I got the kids their lunches for the next two weeks,” she said. “Then I just walked around Target and did Target stuff … and it felt so good.”
“I don’t remember the whole month of February,” she shared, “but people say I’m talking better, I’m looking good. I feel like I’m getting better. This is not my forever.”
According to the American Cancer Society, the number of cancer survivors living in the U.S. — currently nearly 17 million — continues to increase each year as a result of the growth and aging of the population, treatment advances and changes in early-detection. With extended life expectancy, these survivors are also at greater risk of their cancer recurring or spreading — most commonly to the bones, liver, brain and lungs. More than 150,000 people in the U.S. are living with metastatic breast cancer. With the five-year survival rate for people with stage 4 breast cancer only 22%, there’s a particular urgency to finding a cure.
Levene, like other patients, has generously given her tissue to DCI for continuing scientific research and participated in studies that are moving researchers closer to a cure.
“She’s helped with so many studies and has consented to tissue banking every step of the way,” said Marcom. “I want her to know that it’s such an important contribution.”
Breast Cancer Patient Resources
THRIVING TOGETHER: A Support Group for Individuals Living with Metastatic Breast Cancer (MBC)
Meets once monthly. Every 3rd Thursday of the month at 5:30 pm. via Zoom.
Free and open to all individuals living with MBC. No registration necessary. Facilitated by Katrina Cooke.
"What You Need to Know About COVID-19 & Breast Cancer: A Virtual Conversation with Lisa A. Carey, MD, FASCO" (Susan G. Komen Scientific Advisory Board Member, UNC Lineberger Comprehensive Cancer Center)
Thursday, March 26 at 12 p.m.