ori Czyzewski loved decorating for the holidays and adored trips to the beach. So, of course, when her family went on a Christmas cruise to the Bahamas, she was in her glory.

“It was her favorite thing ever,” said daughter Mia Lugaila, 18. “She was such a family person. She loved celebrating with us, especially the holidays.”

After being diagnosed with stage 4 metastatic breast cancer in June 2019, Lori put up Christmas decorations as soon as Halloween was over. She wanted to make sure the family’s Cochran Road home was decorated for the holidays for her daughters, Lugaila, and Madison Baker to enjoy.

Czyzewski didn’t make it to Christmas. She died December 23 at 40, just two days before her favorite holiday.

“At the time, I had no idea what was coming, not even until the day leading up to it,” said Lugaila, a 2022 Mt. Lebanon High School graduate. “I like to think that she was (protecting us).”

October is Breast Cancer Awareness month and, while you’ll likely see a lot of pink T-shirts and buildings lit up for the cause, a national group—with local ties—is working to bring awareness to the deadliest form of the disease: metastatic breast cancer.

Studies show that one in every eight women in the U.S. will end up with breast cancer during their lifetime. Of those women with early-stage breast cancer, 30 percent will go on to develop metastatic disease, where the cancer spreads to other organs, such as the liver, lungs and bones. Its timing can vary from just a few months after a person is diagnosed with their primary form of breast cancer to metastasize as long as 20 years later.

For those diagnosed with metastatic breast cancer, there is no cure.

“It’s terminal,” said Aleksandra Sasha Milicevic, 53, of Questend Avenue, who dedicates a great deal of her time raising money for metastatic breast cancer research, including serving as the co-chair of the Pittsburgh Metsquerade. “It’s heartbreaking…. The life expectancy is about three years…. It’s pretty much a death sentence.”

Researchers are working hard to change that.

“Women today are living longer with metastatic breast cancer than they ever have. That’s pretty clear,” said UPMC researcher Dr. Adrian Lee, the Pittsburgh Foundation chair in precision medicine and a professor of pharmacology and chemical biology at the University of Pittsburgh. He also serves as the director of the Institute of Precision Medicine. “But it’s still a terminal disease…. We need to do more. That’s why we need to continue doing more research.”

Still, the majority of funds raised for breast cancer research goes to the early stages. According to METAvivor, a 501(c)(3) nonprofit that raises money for research for metastatic breast cancer, between 2 and 5 percent of funds raised for breast cancer research is dedicated to metastatic cancer.

In the last five years, researchers said, there’s been a shift to more aggressively study metastatic breast cancer. That is partially due to researchers today having better access to metastatic tissue.

“We’ve made progress but we still have 40,000 patients—men and women—die each year,” said Dr. Steffi Oesterreich, a professor of pharmacology and chemical biology at the University of Pittsburgh and a professor of breast cancer research at the Shear Family Foundation. She also serves as co-leader of the Cancer Biology Program at the UPMC Hillman Cancer Center and co-director of the Women’s Cancer Research Center, a collaboration between the UPMC Hillman Cancer Center and Magee-Womens Research Institute.

Getting Involved

In 2013 while living in Jacksonville, Florida, Milicevic—then 43 years old—was diagnosed with early-stage breast cancer. She faced a host of complications, and underwent six surgeries, one of which almost killed her.

Milicevic joined groups on Facebook for those with early-stage breast cancer, but because of the complications that came with the disease, she didn’t feel like she fit in.

“In early-stage breast cancer support groups on Facebook, if you are someone who has complications, you’re seen as their biggest fear. No one wants to have complications,” Milicevic said.

She began a deep dive into breast cancer research and discovered a huge gap between support groups for women with early-stage breast cancer and stage 4 metastatic breast cancer.

“In the early stage, people are talking about: ‘Oh, I rang my bell.’ ‘Oh, I’m so upset because my nipples are not on the same level,’” she said. “Where, in stage 4 (groups), they’re talking about recording a video message for their children to watch at their milestones because they’re not going to be there. They’re writing letters and getting things organized. They’re talking about how to pick a hospice. It’s like two different worlds.”

Because of her complications, Milicevic felt like she connected better with the folks in stage 4 and she wanted to close the gap and become an ally to support them.

“I felt like people like me should be involved. It’s investing in your future,” Milicevic said. “This can happen to me.”

Along with a friend, Milicevic launched a Facebook group that now has more than 2,000 members, focused on bridging the gap between those with early stage and stage 4 breast cancer. She wanted to rally more women with early-stage breast cancer to help raise funds for metastatic breast cancer.

She continued to meet more and more women with the disease and became connected with METAvivor.

On her own, she raised an estimated $20,000 for the organization. METAvivor, based in Washington, D.C., is focused on funding research, said METAvivor Vice President Barbara Bigelow. The organization also has a branch that lobbies in D.C. for more money to go toward metastatic breast cancer research, along with trying to get patients quicker access to Medicare. They also organize an awareness campaign every October 13—Metastatic Breast Cancer Awareness Day—where cities across the country light up in blue, teal and pink.

Stampeding in D.C.

Milicevic moved to Pittsburgh in 2016 and joined a group from METAvivor on her first “stampede”—a grassroots advocacy program— to Washington, D.C., in 2017. Looking back now at photos from that year, only one of the women that she joined on that trip is still alive.

“People devote themselves to raising money for research, but then they die,” Bigelow said. “It’s very hard to be crusading when the leaders die one by one.”

That’s why allies like Milicevic are important.

On her second trip lobbying in D.C., in 2018, Milicevic and her friend, Jill Griffin, chatted in the car about things they can do in Pittsburgh to raise more funds for metastatic breast cancer research.

One of the biggest fundraisers for volunteer-led METAvivor each year is a Metsquerade event, held in cities across the country, that raises money for research, support and awareness.

They decided to host one in Pittsburgh.

Women from across the city joined in the effort. They held their first meeting on November 14, 2018—a day Milicevic will never forget. Just the weekend prior, she went to visit Laura Williams, who planned to help organize the Metsquerade. Laura was in the hospital and apologized for not being able to make the first meeting. “But we’re going to do this,” she told Milicevic.

Laura passed away the day of the first meeting.

Over the last few years, many women joined together in planning for the event, which was originally slated for April 18, 2020. That included Czyzewski.

Even when she had early-stage breast cancer, Czyzewski wanted to help and make a difference. “Lots of early stagers close their eyes and they’re scared to think of stage 4. Lori was never that person. She knew that 30 percent of people with breast cancer developed stage 4 and she wanted to help them,” Milicevic said.

“She understood the reality before it happened to her,” Lugaila said. “I think that’s why we got so involved. It was the anger that there’s no extra support. There’s not the attention that we need.”

Lugaila compared the death rates for metastatic breast cancer with a plane crash.

In 2019, Czyzewski and Lugaila joined the group in Washington, D.C., for the stampede. At just 15 years old, Lugaila spoke to legislators on Capitol Hill and rallied for support for metastatic breast cancer. It was a weekend she will never forget. After lobbying for change, Czyzewski and Lugaila spent an evening together at a Post Malone concert, having the time of their lives.

While Czyzewski, a NICU nurse, was rallying for a change, she was thinking of her daughters, Milicevic said. “She wanted a cure to be found so that you and Madison won’t have to go through this.”

That’s a sentiment felt across the metastatic breast cancer community. Even if a cure can’t be found in time to save them, they don’t ever want their children to go through this.

The gala

Early in the planning stages, the Pittsburgh Metsquerade crew lost two of their own: Laura Williams and Roberta Szpara. They planned to dedicate the event to them.

Then, COVID pushed the event back multiple times and, by the time it was held on April 23, 2022, six more of the volunteers had died. They included Jill Griffin, Bindy Koontz, Andrea Dimond, Amy Fletcher and Sophia Holland, along with Czyzewski. The event was held in their honor.

“Unfortunately, some of the people that we had that were very active were stage 4 and are not with us anymore,” said Pittsburgh Metsquerade treasurer Stephanie Harris, 56, of Upper St. Clair.

“Research is the only way that we’re going to get toward—not even necessarily a cure—but treatments that will allow people to live with it for years and years,” Harris said. “We tell everyone who will listen that it isn’t always about remembering to get your mammogram. Some people are not going to be lucky and the only thing that will help that is research dollars.”

The Pittsburgh Metsquerade event, benefiting METAvivor, had more than 400 attendees from across the state and brought in $250,000.

“That was a tremendous event,” said Bigelow, who was diagnosed with metastatic breast cancer in 2015 and participated in a clinical trial that “almost killed me but saved my life.”

METAvivor provides grants to researchers who are close to clinical trials. “We really try to zero in on what’s going to come to clinic soonest,” said Bigelow. “Breast cancer is a very mysterious disease and there are so many subtypes and different sneaky ways that it mutates. It’s not a one cure for all situations. There has to be multiple cures. We’re just trying to move the dial closer and closer so that more drugs get on the market, women live longer, and they have a good quality of life. That’s really the goal.”

There’s more to do

Oesterreich and Lee, husband-and-wife breast cancer researchers, moved from Houston to Pittsburgh in 2010 to further their research. While much of their work is independent of each other, they merged labs a few years ago for more efficiency.

There was a lot that was enticing about coming to Pittsburgh.

“There’s unique resources in our region to do this,” said Lee, one of the speakers at the Pittsburgh Metsquerade.

One example: People in Pittsburgh tend to stay in the region, which allows researchers to track the disease over a longer period of time, through changes in lifestyle and age.

Both Oesterreich and Lee focus much of their research on metastatic breast cancer. Through their research, they’ve found that “cancer changes over time,” Lee said. “The disease you first have changes when it comes back, when it metastasizes and when it reoccurs it often is different from the original disease. You can only make that observation if the person is still there (in the same city).”

Today, they work with a large team of top-notch clinicians and researchers, where they work to improve the quality of life for patients with metastatic breast cancer and extend their timeline, while ultimately trying to find a cure. They rely on funding from organizations like METAvivor to keep that research going.

Over the last several years, they’ve seen a lot of progress.

“This is the first time in the history of breast cancer that we can talk about curing patients, including in the metastatic setting,” Oesterreich said. “In some kinds of breast cancer, there is more hope and we’re much further than others. But that’s definitely the ultimate goal, absolutely, to find a cure.”

Both Oesterreich and Lee received grants from METAvivor to further their work.

Through the grant, Oesterreich’s research focuses on metastasis in patients with invasive lobular carcinoma, which covers about 10 to 15 percent of all breast cancers. This subtype differs in that it often metastasizes many years later.

“Very often, it’s 10 to 20 years after the primary breast cancer, which is devastating. You’ve almost forgotten about it and then there it is,” Oesterreich said. It also targets unique sites, like the gastrointestinal tract and the ovaries.

The goal of the grant is to help researchers better understand the cancer and collect data, which will help them receive further funding to continue the research.

The research from Lee’s grant focuses on breast cancer that metastasizes in the brain and a protein called RET.

“Breast cancer often goes to the bone, sometimes the lungs, but one of the most devastating sights is when it goes to the brain,” Lee said. “Survival from brain metastasis is very short—it’s about eight months—and obviously it’s a devastating form of the disease.”

The research focuses on better trying to understand the progression of the disease. The FDA already has approved drugs for RET that are primarily used for thyroid cancer.

“If we can show that it’s important to treat breast cancer, then it would be very easy to repurpose that and use it in breast cancer,” Lee said. “So, it’s quite close to translational research.”

Oesterreich and Lee agree that grants like the ones they received from METAvivor are pivotal to continuing research.

“Philanthropy is a large part of our research program,” Lee said. “It can be challenging because money from the government comes and goes. It goes in waves… and you want to keep the research going, so we use (money from philanthropies to keep it going),” he said.

Much of the money donated to national organizations finds its way back to Pittsburgh.

“Pittsburgh is really a leading institution,” Oesterreich said. “Pittsburgh has made major contributions. When the national and international research communities talk about metastatic breast cancer, Pittsburgh comes up. I think the research here has made tremendous steps forward.”

But there’s still more work to be done.