They came in wheelchairs and bearing canes, some wearing wigs and others, black stilettos. They came from Oregon, Ohio, Boston and British Columbia, introducing themselves to researchers and each other by cancer subtype, stage and individual biology: triple negative BRCA1, stage 3A lobular, DCIS that metastasized and became terminal after 16 years.
But young or old, local or long distance, just diagnosed or nearing the end, the message these breast cancer patients had for doctors and scientists was strong, urgent and consistent: We want to be counted, we want to be heard and, yes, we want to be cured.
Homegrown and patient-driven, the Northwest Metastatic Breast Cancer Conference marked its second year with a record turnout of more than 300 patients, researchers, advocates and caregivers plus thousands more online. Held Friday and Saturday at the Amazon Meeting Center, the conference offered inspiring talks and scientific presentations on new therapies, currently enrolling clinical trials and promising data designed to help metastatic patients fulfill the conference mandate of Living Well, Living Longer and Driving Change.
One big change that needs to happen now, according to many patients and advocates in attendance: National cancer registries need to capture recurrence data.
“We need that data,” said Dr. Kelly Shanahan, a physician and metastatic breast cancer patient from Lake Tahoe, Nevada, who spoke on behalf of two national advocacy groups, Metavivor and Met-Up. “It’s unconscionable that in 2017, I can order something from Amazon and get it in one day, but we’re not tracking the conversion from early stage breast cancer to metastatic.”
Despite strides in early stage breast cancer, the death toll for metastatic disease has not changed over time: 40,000 women (and men) still die every year. Metastatic patients often feel left out of the “sunny” survivorship message since, despite advances, they will eventually tap out of available treatments and die from their disease. They also feel forgotten by national databases, like the National Cancer Institute’s Surveillance, Epidemiology and End Results Program (SEER) cancer registry, which tracks statistics on original diagnosis and death, but not metastatic recurrence.
As a physician, Shanahan said she’s familiar with doctors who claim “it’s too hard” to capture recurrence data and fold it into registries frequently mined by researchers for studies. But she doesn’t buy the excuses.
“We have electronic medical records and almost all of us use them now,” she said. “We can track that data. We need to know the numbers because everything that’s done is based on numbers; research dollars are based on numbers. There’s no reason we can’t track all the conversions. It’s 2017, not 1917.”
This impassioned plea to be seen and heard and counted was echoed in a stirring keynote address by Shawn Johnson, a first-year medical student at Harvard Medical School, who spoke on the lack of equity that continues to plague medicine, resulting in poor access, inadequate clinical trial participation and higher cancer mortality rates for patients of color and other underserved groups.
“When we go in to do health disparities work, you’re not going in to do volunteer or community service,” he said. “What you’re walking into is a very ugly and heartbreaking history. There are still people in California who have relatives who were legally sterilized [without consent]. There are people in these communities who do not see research as a benefit, who have never been benefitted by it, who — if anything — have been hurt and broken and beaten by these systems.”
Instead of asking, “How can I educate these people so they’ll participate in studies?” or “How can I get these people to trust me?” Johnson suggested researchers ask, “How can we educate ourselves on the history of these communities and understand what their truth is?”
The conference, conceived and organized by local metastatic patients Lynda Weatherby, Beth Caldwell, Teri Pollastro, Joyce Bittinger, Bridgette Hempstead and many others, and executed with the help of sponsors Komen Puget Sound, Amazon Web Services, Swedish Cancer Institute, Eisai, Pfizer, Cascadian Therapeutics, Odonate Therapeutics, Novartis and Seattle Cancer Care Alliance, featured a wide range of experts presenting on all things cancer.
Day one was open to both metastatic and early stage patients and covered integrative oncology and how these companion therapies — acupuncture, massage therapy, meditation, medical marijuana, and others — can be used in conjunction with standard palliative care to better control the side effects of cancer and its treatment, such as pain, nausea, fatigue, insomnia and lymphedema.
Day two focused on therapies coming down the pipeline; new clinical trial opportunities; patient-researcher partnerships; data collection (or lack thereof) and advocacy.
Researchers from Fred Hutch, Swedish Cancer Institute, Virginia Mason and other centers spoke on genomics, immunotherapy, vaccine therapy and translational research designed to bring better, less toxic treatments from bench to bedside.
Additional breakout sessions covered metastatic subtypes (triple negative, HER2, ER+ and lobular) as well as metastatic sites (bone, brain, liver, lung and the unique sites associated with lobular).
Patients traveled to Seattle alone or in groups; brought along friends, caregivers and children. Most folded the conference into schedules packed tightly with chemo infusions, CT scans, blood draws and the usual demands of a cancer-free life: jobs, children, relationships. There were moments of joy as online BFFs met in person for the first time; moments of despair as participants heard of beloved friends who’d just succumbed to disease.
Most of all, there was strength, resilience and a deep unwavering determination to be seen, heard, and acknowledged, not just as cells on a slide or grim statistics on a graph, but as informed and engaged participants in the push to find cures.
“We as patients should no longer be viewed as subjects of research,” said Shirley Mertz, president of the MBC Network. “We need to be partners in research.”
The following livestreams from the Northwest Metastatic Breast Cancer Conference are currently available, courtesy of Komen Puget Sound:
The Changing Landscape of MBC: Why Our Data and Voices Matter, featuring Fred Hutch's Dr. Ruth Etzioni
Lobular Breast Cancer 101 break-out session: Fundamentals, featuring Fred Hutch's Dr. Hannah Linden
Lobular Breast Cancer 102 break-out session: Metastasis and Clinical, featuring Fred Hutch's Dr. Hannah Linden
Day 2's Welcome and introduction; Beth Caldwell award acceptance speech; keynote by Shawn Johnson and Hot Topics in MBC: New Treatments and Clinical Trials, featuring Fred Hutch's Drs. Julie Gralow, Kevin Cheung, V.K. Gadi, Sasha Stanton and Jennifer Specht.
Day 1's Welcome and introduction; Introduction to Integrative Oncology; Understanding Additional Integrative Therapies (Meditation; Acupuncture; Massage Therapy; Medical Marijuana, etc.), featuring Fred Hutch's Dr. Heather Greenlee.