The keynote speaker got the flu and the morning sunshine turned to sloppy rain, but hope, health and science continued to shine brightly at the third annual Northwest Metastatic and Lobular Breast Cancer Conference, held Friday and Saturday in Seattle.

Created for patients by patients, the conference was facilitated by funding from Komen Puget Sound and a slew of sponsors, chief among them Amazon Web Services, which hosted more than 300 patients, researchers, caregivers and vendors at its downtown meeting center for the second year in a row. AWS also provided free livestreaming so thousands of patients across the country could virtually attend (links available here, here and here). In addition, there was on-site interpretation and translation for Spanish-speakers, and a side session in Spanish for patients and community health workers was broadcast via the Consulate of Mexico in Seattle’s Facebook page.

How do you combat metastatic breast cancer which, despite all the advances and the “awareness,” still kills roughly 41,000 women and men every year? For these conference organizers, it’s by disseminating information, clinical trial opportunities and resources as relentlessly as cancer spreads its deadly seeds.

Getting past the pink

Lynda Weatherby and Teri Pollastro, the metastatic patient powerhouses co-chairing this year’s NW MBC Conference, kicked things off Friday by sharing the hard truths of their cancer stories, which may be unfamiliar to those accustomed to the usual pink narrative.

“I started out as a stage zero DCIS patient in 2001 with a kindergartener and a preschooler,” said Weatherby, 53, of Seattle. [DCIS, or ductal carcinoma in situ, is often considered a “pre-invasive” breast cancer.] “I had a bilateral mastectomy and thought my cancer was in the rearview mirror, but when my kindergartener was graduating from high school, it roared back.” Weatherby told the audience she’d dismissed hip pain and other symptoms as signs of aging because metastatic, or stage 4 disease, was not on her radar.

“I knew the word ‘metastatic,’ but I really didn’t understand it,” she said. “Early-stage patients need to know they can progress, even years after their original diagnosis. That’s why I’m here, to get that information out.”

Pollastro, another early stager who went on to develop mets, also stressed the importance of staying informed, adding that she hoped “each of us can leave with more knowledge about our diseases as well as a few pearls of wisdom we can incorporate into our lives.”

Both women, research advocates for Fred Hutchinson Cancer Research Center and its clinical care partner, Seattle Cancer Care Alliance, talked about the need for more funding to bring an end to the disease. Metastatic disease still impacts up to 30 percent of breast cancer patients, some of whom are diagnosed with it from the get-go (de novo); others who relapse after early-stage treatment. Despite all the awareness, the death toll from MBC hasn’t budged in more than 30 years.

“Metastatic disease doesn’t get a lot of attention in breast cancer awareness,” Weatherby said. “We need to change that. Help us lift this to the top of the list of things that get funded because when we solve this, we will solve it all.”

Refined treatments and reasons for hope

Patients came to the Seattle conference from around the country — some directly from treatment chairs.

“I had an infusion of Herceptin this morning, then booked it to the airport,” said 36-year-old triple- positive mets patient Brandi Fleck, a self-described “hipster metster” from Eugene, Oregon, who was initially diagnosed at 30, then progressed a few years later. Why had she come? To “learn about my options, make more connections and feel more empowered.”

Empowerment came mainly from the science, presented by breast cancer researchers from both coasts, including national thought leader and former president of the large cancer research organizations ASCO and AACR Nancy Davidson, MD, who nimbly filled in for keynote speaker and breast cancer surgeon / researcher Susan Love, MD, MBA, after she fell ill with the flu.

“We should start by celebrating the fact there are 3 to 3.5 million breast cancer survivors in the country,” said Davidson, director and senior vice president of Fred Hutch’s Clinical Research Division and president and executive director of SCCA. “To me, that’s a wonderful statistic because that’s an ever-increasing number of people who are surviving treatment.”

The longtime oncologist and clinical researcher, who holds the Hutch’s Endowed Chair for Breast Cancer Research, went on to discuss the current landscape of breast cancer research, pointing to the potential for precision medicine and tailoring cancer therapies to make them more effective and less invasive. She spoke of new oncotype assays (or tests) which now allow certain patients to know in advance whether a chemo will or won’t work on their tumor and highlighted fast-tracked therapies like Ibrance, which went from “non-existence to routine practice in five years.” She also reiterated the importance of clinical trials and shared findings from the large cancer conference ESMO, the European equivalent of ASCO, regarding a new combo therapy for hard-to-treat triple-negative breast cancer.

Above all else, she encouraged attendees to be heartened by the ever-growing arsenal of new and nuanced therapies in the breast cancer armamentaria.

“We are fortunate that we now have five different pillars to think about when treating many cancers,” she said, referencing surgery, radiation, chemotherapy, molecularly targeted treatments (including endocrine therapy) and most recently, immunotherapy. “And we are refining them as a matter of routine.”

Exercise, organoids and a ‘sneaky’ subtype

The rest of Friday and all of Saturday were dedicated to dozens of presentations from scientists, oncologists and patient advocates on new findings, newly launched clinical trials and resources to help empower those living with — and dying of — metastatic and lobular breast cancer.

Speakers from Fred Hutch, SCCA, Swedish Cancer Institute, Virginia Mason Hospital, the Polyclinic (all in Seattle) and the University of Pittsburgh Cancer Institute shared information and advice on everything from immunotherapy to integrative medicine; financial toxicity to post-treatment sexual dysfunction; chemo brain to genetic counseling.

Fred Hutch clinical researcher and SCCA breast cancer oncologist Julie Gralow, MD, spoke at length about what early and metastatic breast cancer patients can do in the realm of diet, exercise and lifestyle to “improve their quality of life and destroy cancer’s.”

“Exercise should be part of the breast cancer treatment plan for all stages and all ages,” she said, pointing to evidence that physical activity can decrease lymphedema, hasten healing after surgery, cut back on nausea, boost energy levels, reduce pain from treatment, and reduce the risk of cancer recurrence and second cancers. “Exercise is medicine. If we could bottle it as a pill, we’d prescribe it for all of you.”

Translational researchers Cyrus Ghajar, PhD, and Kevin Cheung, MD, both of Fred Hutch, talked about their respective areas of MBC research, disseminated tumor cells and tumor-cell clusters, both of which can — but don’t always — lead to metastasis.

“The majority of patients who have disseminated tumor cells in their bone marrow — even though they are at higher risk — aren’t going to relapse,” Ghajar said. “But we still need drugs to target these cells. That’s what we’re working on and other labs are working on.”

Cheung announced the launch of his new TARGET-CLUSTER pilot study, designed to better understand the spread of metastasis and stop it in its tracks.

The study, open to MBC patients in treatment at SCCA, is funded in part by donations made in honor of patient advocate extraordinaire and NW Mets Conference co-founder Beth Caldwell, who died one year ago. (Interested patients can send an email to targetcluster@fredhutch.org for more information.)

“The big picture is circulating tumor cells are bad news,” said Cheung. “We are looking for molecular tags that we can use to target clusters for destruction. We think this is a broad approach that will lead to new types of therapies to improve outcomes for patients like you.”

Smaller breakout sessions covered the latest findings on breast cancer types (think triple negative, estrogen-receptor positive or HER2 positive) and therapies for common mets sites such as brain, bones, liver and lungs.

Lobular experts Steffi Oesterreich, PhD, of the University of Pittsburgh Cancer Institute and physician-scientist Hannah Linden, MD, FACP, of Fred Hutch and SCCA offered three sessions on the “sneaky” subtype of lobular breast cancer, which doesn’t always create a lump, sometimes metastasizes to oddball locations and often doesn’t read on imaging, including mammograms.

Advocacy tracks and filling in the gaps

As with the previous two years, patient involvement took center stage, with sessions on organizations that are raising awareness, funding and/or scientific literacy in the MBC arena. Patient advocates Pollastro and Weatherby were joined by Leigh Pate, Kelly Shanahan, MD (patient and OB-GYN), and Andrea Hutton to talk about their involvement with advocacy groups such as Metavivor, MBC Alliance (and its newly-formed patient registry and clinical trial matching tool, MBC Connect), FORCE (Facing Our Risk of Cancer Empowered), SHARE Cancer Support, Living Beyond Breast Cancer and the metastatic patient activist group MetUp, as well as research-focused initiatives such as the MBC Project, TBCRC and Project Lead.

Pate, a lobular breast cancer patient, was awarded the Beth Caldwell Breakthrough Leadership Award for her efforts to raise the profile of this understudied subtype through the creation of the Lobular Breast Cancer Alliance.

And Fred Hutch biostatistician Ruth Etzioni, PhD, shared an update on her efforts to fill in data gaps in the NCI’s SEER Cancer Registry, which tracks cancer incidence in the U.S. but doesn’t currently have the infrastructure to capture metastatic recurrence. This lack of tracking has led many metastatic breast cancer patients to feel that they are not being counted.

“The SEER registry tells us about incidence, diagnosis and mortality, but it doesn’t tell us about the in-between,” said Etzioni. “Our goal is develop ways to get the registry to bring in information on recurrence and progression on an ongoing basis.”

Etzioni and NCI investigator Angela Mariotto, PhD, published findings earlier this month in the AACR journal Cancer Epidemiology Biomarkers and Prevention that showed 20 percent of early-stage breast cancer patients (stage 1 to stage 3) will experience a metastatic recurrence within 20 years.

Etzioni’s latest study, RECAPSE — REcurrence using Claims And PROs [patient reported outcomes] for SEER Enhancement — is using a “gold standard patient registry from Swedish with very good information on metastatic recurrence,” medical claims data and a patient survey to lay the groundwork for a machine learning style approach to validating recurrence data moving forward.

“We’re using health insurance claims and other information but that’s not enough,” she said. “We also want to go to patients and ask them about their experience. This work gives patients a voice.”

Weatherby, conference co-chair, reiterated the importance of gathering accurate data on metastatic breast cancer recurrence: No numbers means no funding.

“The reason metastatic breast cancer is underfunded is because they don’t know how many mets patients there are,” she said. “This helps us make the case for more metastatic research and it also helps early stagers realize they have to be vigilant. It’s not a small problem. Thirty percent of patients are going to experience metastatic breast cancer.”

Weatherby assured attendees their advocacy efforts were working, sharing the news that funding has been promised for an additional 30 metastatic breast cancer conferences in the U.S. in the next year. Congress also recently bumped its 2019 cancer research funding by $2 billion in the last year.

“As a result of patient voices, the trend has changed with cancer funding,” she said. “Because of cancer patient advocacy, the National Cancer Institute is getting more money. Advocacy is having an impact.”

This article was originally published on October 31, 2018, by Hutch News. It is republished with permission.