Lynda Weatherby and Teri Pollastro don’t think pink.
That color has served its purpose, they believe. Good job, pink ribbons, pink KitchenAid mixers, pink football helmets. Everyone now knows that pink is synonymous with Breast Cancer Awareness Month, held each year in October, a time to boost public consciousness about the importance of getting screened for breast cancer.
“My perspective is there is so much pink, but we haven’t zeroed in on the part of breast cancer that kills people,” says Weatherby, who was diagnosed with early stage breast cancer that recurred 12 years later. “Metastatic cancer is the hardest piece of the puzzle to solve.”
Metastatic, or Stage 4, breast cancer — which involves breast cancer that has spread beyond axillary lymph nodes in the armpits, typically to the bones, brain, liver and lungs — is the focus of the Northwest Metastatic Breast Cancer Conference that Weatherby and Pollastro are organizing on Friday and Saturday. It’s the third year that the free event has been held in Seattle. The disease is treatable — for some longer than for others — but remains a terminal diagnosis. In other words, there is no cure.
Up to 30 percent of breast cancer cases involve metastasis — either patients first diagnosed at Stage 4 or those initially diagnosed at earlier stages who eventually progress to Stage 4. Weatherby and Pollastro know this is not welcome news, but they feel it’s vital for patients to know the statistics so that they can be on guard.
Had Weatherby better understood metastasis, she wouldn’t have waited to check out her nagging hip pain until her cancer – successfully treated after she was first diagnosed as Stage 0 ductal carcinoma in situ (DCIS) in 2001, a year after she finished breast-feeding — had invaded her skeleton and spread to her brain in 2013.
On higher alert
“The most common perception now is that five years cancer-free is a milestone,” says Weatherby, who is 53 and lives in Seattle. “That needs to change. When you have a history of breast cancer, you always need to be on higher alert.”
Unexplained weight loss, extreme fatigue and bone pain lasting more than a few weeks can be symptoms that breast cancer has recurred or spread. “If patients are tuned in to these changes, they will take action more quickly,” says Weatherby. “The general lack of awareness of what metastasis feels like and what my risk was led me to dismiss what was going on instead of going to my doctor and getting a scan.”
Pollastro’s experience is both similar and different. At six weeks postpartum, she too was diagnosed with DCIS, a diagnosis that today spurs debate about whether this early-stage disease should even be considered cancer. She was treated and dismissively told, “Go live your life,” when she asked questions about the possibility of recurrence. That prompted her to switch her annual follow-up care in 2003 to Seattle Cancer Care Alliance, where Dr. Julie Gralow was drawing blood from patients and running tumor markers to assess their likelihood of recurrence. “It was a project she was working on,” says Pollastro, who is 58 and lives on Mercer Island.
Pollastro submitted her blood sample then left with her family on a ski trip to Canada, where she didn’t have cell service. When she crossed the border back into the U.S., “my phone was blowing up. It was SCCA saying my tumor markers were very elevated and I needed to come in for scans.”
Pollastro’s children were 3 and 7 years old when she found out that her cancer — diagnosed four years earlier — had returned and spread to her liver. Holding her scans, Dr. Gralow told Pollastro that the statistics were not good. “But you are not a statistic,” she emphasized.
At the time, Pollastro found that even health care professionals were misinformed about metastatic breast cancer. “A nurse told me I should get my affairs in order,” she says. “It was very isolating because people thought if you were Stage 4, you were about to die.”
Slowly, awareness about metastatic cancer is increasing as more studies are being published. But the amount of money funneled toward metastatic cancer research is still just 7 percent of what’s poured into breast cancer research overall, according to the Metastatic Breast Cancer Alliance.
“The doctors are learning right alongside us,” says Pollastro.
On one hand, that frustrates Pollastro and Weatherby, who wish metastatic cancer had gotten more attention years ago. On the other, they have little choice but to move forward. “We have both tried hard to be bridge-builders in our advocacy,” says Weatherby.
The 'other' breast cancer narrative
That bridge-building has involved extending an olive branch to the local Susan G. Komen affiliate, which does the behind-the-scenes work to put on the conference. Within the community of breast cancer patients and survivors, there has been some skepticism about Komen’s commitment to spreading the word about metastatic cancer. “Historically Komen has not been seen as really supporting this ‘other’ breast cancer narrative,” says Robyn Sneeringer, deputy executive director of Susan G. Komen Puget Sound. “Externally we are known for survivorship, and that narrative doesn’t necessarily jibe with the 41,000 women and men who die of breast cancer each year.”
In acknowledgement of that criticism, Komen has been expanding its focus to include advanced disease. It has a new hashtag, #MoreThanPink, that conveys that “this is about more than a pink tutu and more than a race,” says Sneeringer. “It’s about stepping up and taking action.”
A key aspect of taking action has involved the conference, which began in 2016 after Komen received a grant to put on an event about metastatic breast cancer. Sneeringer reached out to Weatherby shortly afterward, along with Beth Caldwell, who co-founded METUP, an advocacy organization for metastatic breast cancer patients whose tagline pulls no punches: “Dying for a cure.” Weatherby and Caldwell had met through a support group; Weatherby credits Caldwell with turning her into a metastatic breast cancer firebrand after Weatherby discovered Caldwell’s blog, Cult of Perfect Motherhood, about two years after her own metastatic diagnosis. On her blog, Caldwell, a lawyer, dropped curse words like candy and chronicled her experience with her disease, which was diagnosed only once it had metastasized.
Caldwell, who died last year, observed that deaths from breast cancer had scarcely budged over the past 30 years despite so much pink. She and Weatherby organized Seattle’s first metastatic breast cancer conference to try to start changing that statistic.
Dozens of metastatic breast cancer conferences around the country
The conferences have been so successful — last year’s livestreamed event had 40,000 views — that they have spawned at least 30 similar events throughout the U.S. this year. “Komen's commitment to metastatic breast cancer is changing because Beth Caldwell and the women who have organized this conference have demanded it,” says Sneeringer. "There is still a long way to go, but progress is being made."
With Caldwell gone, Pollastro has taken her place as co-organizer. The conference will feature Nancy Davidson, executive director of Seattle Cancer Care Alliance and an expert in breast cancer biology and treatment, as Friday’s keynote speaker. There will be also be sessions on diet and exercise, finances, “chemo brain” — and sex. “That’s something we all kind of whisper about,” says Pollastro. “It’s hard to talk about these things and hard to get help.”
On Saturday, the focus will shift to research, including immunotherapy and clinical trials, and will include breakout sessions geared to specific breast cancer sub-types (triple-negative, for example, or estrogen-positive) and metastasis locations (bone, brain, lung, etc.). There will also be a special series of sessions on invasive lobular cancer, which accounts for up to 15 percent of invasive breast cancers but has not historically been the focus of significant research.
Underscoring the importance of the conference is the fact that mean life expectancy after a metastatic diagnosis is just three years, a number that both Pollastro and Weatherby surpassed long ago.
"I don't have many friends diagnosed around the same time as me because they are all dead,” says Pollastro. “We want to change that.”
Seattle Cancer Care Alliance is a sponsor of the conference, which will be livestreamed. All sessions will be interpreted into Spanish and there will a dedicated session for Spanish-speaking patients. In-person registration is available on site on Friday and Saturday. Details can be found at https://komenpugetsound.org/nwmbcc/. Find other Fred Hutchinson Cancer Center stories on our blog.
