It seemed like a family curse. Shannon Marsh's aunt, grandmother and great-grandmother all died of cancer by their early 40s. Marsh herself had lost an ovary to a rare cancer at the tender age of 12. So in 1999, her parents sought newly developed tests at the University of Washington to better understand their family's genetic risks. Her father tested positive for an inherited mutation in BRCA2, one of two tumor-suppressor genes responsible for hereditary breast and ovarian cancer (the other is BRCA1). Shannon had genetic testing done, too, and found she carried the familial mutation as well.
Women with BRCA mutations face lifetime breast-cancer odds of up to 85 percent and a lifetime ovarian-cancer risk of up to 60 percent. That compares with an approximate average 12 percent lifetime breast-cancer risk. In other words, women with an altered BRCA1 or BRCA2 gene are three to seven times more likely to develop breast cancer than women without alterations in those genes. Women in the general population have about a 1 percent to 2 percent lifetime ovarian-cancer risk. Marsh, like many mutation carriers, faced tough choices about what to do next.
"You feel so overwhelmed and alienated because you feel like you're the only one," Marsh said. "I knew my genetic status, but I didn't know what the right choices were. The information created many more questions than answers."
What Marsh really needed was the support and information only a cadre of women in the same position could provide. She worked with Ksenia Koon, then a genetic counselor at the UW, to form the only support group in the Northwest for women who are at high risk for cancer, but don't necessarily have it. In that circle, Marsh found an amazing network with which to share anxieties, receive guidance, ease isolation and exchange treatment and symptom information.
"For me, it's been empowering," said Marsh of both the testing and the support group. "It made me take action. This was a time bomb, and I wasn't willing to wait around for it to go off. I want to be alive to watch my kids graduate from high school." In her case, next steps included prophylactic surgery to remove her remaining ovary and without-fail annual cancer screenings. She also left her career as a lawyer and became a patient advocate for the Hutchinson Center's Public Health Sciences Division a couple of years ago.
The high-risk support group is just one facet of the Seattle Cancer Care Alliance's (SCCA) breast-cancer education and outreach efforts. The teaching and outreach work, directed since June by Koon, are part of the SCCA's Breast Care and Cancer Research Program. Through patient and physician education, community efforts and advocacy, the program is creating unique opportunities for women to learn, hope and thrive, regardless of the threat or reality of cancer.
The Breast Care and Cancer Research Program, which began at the SCCA in 2001, has four specialty clinics. The Breast Health Center offers rapid evaluation of suspicious lumps, abnormal mammograms and other symptoms of concern. The Breast Cancer Specialty Center brings together surgeons, oncologists, radiologists, pathologists and internists at one time to help newly diagnosed patients navigate treatment options. The Breast and Ovarian Cancer Prevention Program also brings together a team of doctors to help women at high risk of breast or ovarian cancers develop prevention and screening plans. The Women's Wellness Follow-Up Clinic offers long-term screenings and a wide spectrum of integrated specialty care services — from mental health to nutrition to physical therapy — for women who are at least five years past a breast or ovarian cancer diagnosis or who have high hereditary risk for cancer.
"The Wellness Clinic helps women switch from a focus on disease to a focus on wellness," said Dr. Julie Gralow, an SCCA oncologist and one of the founders of the two-year-old program, which follows about 250 women. "It's really different in its focus on total health. There's no other clinic that comes close, anywhere."
Beyond cancer and osteoporosis screenings, Wellness Clinic patients are given support to deal with cancer's aftermath, whether it's menopausal symptoms, weight gain or fears of recurrence. Koon coordinates both a quarterly lecture series and newsletter for women in this program. A naturopath will soon join the staff, and Gralow hopes to add an exercise facility, acupuncture and massage therapy in the future, both as resources for the patients and to enable research into alternative approaches.
"The majority of women diagnosed with breast cancer in 2005 will survive their disease," Gralow said. "We want to make sure we're providing them with updated information about exciting new treatments. It's really become an era of less is more: less surgery, less radiation, more targeted therapies."
"We really want to focus on getting women through treatment and then physically and mentally getting them into survivorship mode. We're trying to make this a positive, educational and empowering experience."
"Patients want more than just treatment," said Koon. "They want to understand. They want to be involved. The more we can do to make that happen, the stronger our program will be. Julie really looks forward and asks, 'What do we need to be cutting-edge in terms of the services we provide our patients?'"
Meeting everyone's needs
"Our goal is that patients will see the SCCA not only as an exemplary place for receiving patient care, with some of the best doctors in the nation and some of the brightest minds behind the studies, but that they will also come here because of the support systems and other opportunities to become more involved in their own health care and education. We want to have programs and services available that meet the needs of everyone."
Gralow walks the talk about empowering cancer survivors. In 1995, a group of local women who had conquered cancer were training for the Danskin Triathlon. They asked Gralow to serve as their team physician, which she did. Not only was she inspired by the group's tenacity and strength, she was amazed by the physical and mental benefits gained through the training. There is a growing body of evidence that suggests exercising regularly provides significant health benefits — possibly even offering protection against cancer recurrence nearly on par with chemotherapy and newer drug and hormonal treatments.
Gralow and Lisa Talbott, a fitness and women's rehabilitation expert, saw the need to support cancer survivors in their quest for exercise and fitness. They founded Team Survivor Northwest, which offers year-round fitness opportunities for all female cancer survivors. Activities range from swimming, biking and outrigger canoeing to yoga, mountain climbing and dragon boating. Today, Gralow and Koon serve as co-chairs of Team Survivor's medical advisory board and Gralow is the medical director, and the group is now a national organization with affiliates around the country.
Another part of being at the forefront of breast-cancer treatment involves keeping SCCA physicians and doctors in the region informed about emerging data and promising treatments. To facilitate this, Koon plans quarterly, half-day retreats for the breast-cancer faculty from the SCCA and UW. "To block out time to all be together is a rarity because our schedules are so tight," said Gralow of the chance to have lengthy talks with her colleagues. "Sometimes new data comes up and we might need to discuss changing the way we manage things. We want to talk about areas of interest and situations where there's no obvious one right way to treat a patient. Sometimes, research projects evolve out of it."
Koon serves as the SCCA liaison to many of the regional cancer support groups, including the American Cancer Society, Gilda's Club and Cancer Lifeline. She coordinates a summer research program for first- and second-year medical school students, funded by the American Cancer Society. The effort encourages medical students to consider specializing in oncology by teaming them with oncologists for an eight- to 12-week stint involving patient care and projects.
Every two years, Koon also organizes a regional breast-cancer education seminar for physicians. The two-day workshop features national breast-cancer experts. Following this year's conference in October, the SCCA is hosting its second Medical Disparities in Breast Cancer gathering, with support from the Susan G. Komen Breast Cancer Foundation. About 200 local advocacy group members and providers will look at how to better reach underserved populations.
"We talk about everything from how do we increase mammography screening and improve clinical-trial participation, to how to educate women about getting care following a cancer diagnosis," Gralow said. "It's really exciting, and it generates a lot of good discussion. We try to encourage and make it easy for the underserved to participate in virtually everything we do."
Serving the underserved extends beyond the local community for Gralow and Koon. Both have been involved in mentoring women and physicians in Eastern Europe as a grass-roots breast-cancer advocacy movement has grown there. They organize forums every two years for patient advocates, physicians and cancer survivors to come together and learn.
"Our goal is not to say, 'Well, here's what we're doing in breast-cancer advocacy in the United States, and you should be doing these things, too,' but to help them know what their resources are and to learn from each other about what's possible in their own countries," Gralow said.
Gralow first became involved in Eastern Europe in 1997 through the Program for Appropriate Technology in Health's Ukrainian Breast Cancer Assistance Project to improve breast cancer health infrastructure in Eastern Europe — especially breast-cancer services in Ukraine. It was an era when the bulk of physicians there did not tell patients their diagnosis or discuss treatment options, fearing patients could not handle news like a cancer diagnosis.
At a conference for Eastern European oncologists, Gralow asked some female breast-cancer survivors to speak about the patient perspective on such guarded communication. "It was huge for the doctors to hear from patients how it felt when a physician just said they had a bad infection in their breast and that's why it needed to be removed," she said. "And when they were going on chemo, they were just told they needed really potent antibiotics that would take their hair out."
The advocacy movement snowballed. In Ukraine, 22 of the 25 provinces now have breast-cancer support groups. Ukraine survivors hold an annual rally down the main street of Kiev, the March for Life and Hope.
The march is a celebration of resilience organized by and for breast-cancer survivors throughout the country and is a visible sign of a movement that has already improved the lives of hundreds of women with breast cancer.
Gralow and Koon are organizing a second biannual Eastern European Breast Cancer Advocacy Forum to be held in October in Kiev. The meeting builds on the foundation of providing a support network in Eastern Europe to empower women physicians and leaders to participate in outreach, advocacy and activism. Participants collaborate with delegates from other countries with established outreach programs and gain valuable insights for their own countries. Gralow is considering spearheading a similar project in China, as part of the Center's focus on Pacific Rim collaboration.
For Koon, the far-ranging programs she coordinates — whether it's arranging doctors to speak to the high-risk support group, connecting cancer survivors with exhilarating physical challenges or encouraging fledgling patient advocates in developing countries — support a common goal. "How can we help women who fear or have had cancer find their way so they feel empowered?" she said. "Cancer might not be entirely bad news — maybe they can use the experience to further themselves and to really learn about who they are. We want to give people hope and help them use the resources they already have to make a difference in their lives and in the lives of others."