The following blog appeared in The Huffington Post on March 9, 2015.
One of the most remarkable qualities of the breast cancer community is its willingness to help others who are facing the disease today or might in the future. Millions of people in our community now have the opportunity to do that, and in my view, it’s a game-changer.
The app I’m referring to, introduced today at the Apple Spring Forward event, has a fairly long name: Share the Journey: Mind, Body and Wellness after Breast Cancer Treatment. But it has a very simple goal: to help millions of people understand and manage effects of their breast cancer treatment, while contributing to a body of knowledge that can smooth the journeys of those to follow.
Like so many groundbreaking developments in science, this app started with a simple observation. Dr. Andrew Trister, a Seattle radiation oncologist, often treated breast cancer patients who told him they were experiencing confusing symptoms after completion of their treatments. Many were having trouble sleeping, experiencing mood swings, fatigue and cognitive problems. In numerous cases, these symptoms were affecting their ability to work or care for their families.
They also told him they felt out on a ledge, without support. And since there were few good, large studies that addressed these specific issues, many physicians felt (and still feel) unequipped to help their patients in meaningful ways.
Dr. Trister saw the opportunity to change the story for women and men with breast cancer. He reached out to Dr. Stephen Friend, president of Sage Bionetworks, a Seattle-based nonprofit biomedical research organization, who also wanted to help. And the Share the Journey app was born.
With funding from the Robert Wood Johnson Foundation, Friend and Trister enlisted the expertise of nationally recognized cancer researchers: Dr. Patricia Ganz of UCLA, Dr. Ann Partridge of Dana-Farber (both members of our Komen Scholars advisory panel), and exercise expert Kathryn Schmitz, Ph.D., MPH, of the University of Pennsylvania.
These experts also worked with Dr. Susan Love (who with Komen and the Young Survival Coalition introduced the Health of Women Study (HOW) in 2013 to track people after treatment), and Dr. Judy Garber of Dana-Farber, another of our Komen Scholars.
I mention the Komen connection because we’re very proud that we’ve been asked to help spread the word and enlist participation in the HOW study and this one – along with many of our partners in the Metastatic Breast Cancer Alliance: breastcancer.org, the Avon Foundation for Women, and the Dr. Susan Love Research Foundation.
To that end, I’m asking our community to download – and use – the Share the Journey app, available in the iTunes store at this link.
When you do, you’ll be encouraged to keep a personal diary and use the app to track five of the most common after-effects of breast cancer treatment: fatigue, sleep issues, cognitive issues, mood and exercise.
Data from the app can be collected, in a completely confidential way, for important studies that will give researchers the information they need to identify patterns and make recommendations on how we can ease the after-effects of breast cancer treatments.
The benefits are two-fold: By keeping a consistent diary, you may see patterns that you might not have noticed before. You may find out, for example, that on days you do yoga, you feel better. Or on days when you don’t exercise, you feel fatigued. This information can help you set personal goals and strategies that can improve your well-being.
Of course, the potential benefits to medical science are huge. When we can get a very large global community of women reporting their symptoms, we can get a better understanding of what women actually go through after treatments. This gives us better insights into what’s causing these symptoms, and will help develop recommendations – based on scientific evidence – to improve quality of life.
I’ve long been an advocate for the use of data carefully obtained from patients to help solve important issues in medical science. My hope is that the collaboration of breast cancer organizations, and the input of millions of women and men in our community, will lead to better, targeted, “person-centered” care for breast cancer patients, even as we continue to fund medical research for better treatments, cures and prevention of this disease.
This is an opportunity for anyone experiencing symptoms – and even those who are not – to do something for themselves, and help others.
Share the Journey is open to women in the U.S. between the ages of 18 and 80, with or without a history of breast cancer. A Spanish-language version of the app and efforts to expand the study to additional areas around the world are under development. Sage Bionetworks and its collaborators are also working to extend the study to include men who have been treated for breast cancer.
On March 8, International Women’s Day, the hue and cry for gender equity and a better life for girls and women galvanizes around the theme, “Empowering Women—Empowering Humanity: Picture It!” with the United Nations aiming to “mobilize all people to do their part.” When it comes to mobilizing for change, no one moves more nimbly and purposefully than the American nonprofits that first pictured today’s global breast cancer awareness movement.
I stepped into this charitable world more than 30 years ago with a promise to my dying sister to end breast cancer. I had no idea how even to begin to create such a change. Over the years, by listening to other women’s stories and connecting their power and passion with the larger community, we built Susan G. Komen into the world’s largest nonprofit source of funding in the fight against breast cancer. As we grew, the nonprofit sector as a whole became an extraordinary force for transformation. Democratization of good ignited a passionate civic evolution. Now is not the time to let that evolution slow.
The future I see for empowering humanity this International Women’s Day is reflected in the faces of three young mothers with late-stage breast cancer whom I met not long ago in Tanzania’s Ocean Road Cancer Institute. They had overcome great barriers of stigma, transportation and cost—only to arrive at the clinic in advanced stages of the disease—too late. Today, we are expanding education about breast cancer in Tanzania thanks to the clarion voices of a generation of women and their families who lived and fought the disease.
In its first year alone, Pink Ribbon Red Ribbon screened 27,000 women, identified 5,000 pre-cancerous lesions and referred more than half of those for diagnosis and treatment. Yet, in Tanzania and much of Sub-Saharan Africa, more than 90 percent of women who finally seek treatment are diagnosed in late stages and are unlikely to survive the disease. This is not the time to be satisfied with early achievements.
We must picture a world where bold, groundbreaking scientific research moves quickly from bench to bedside to provide better treatment options for women with advanced cancer and metastatic disease. Where we find gaps in research and treatment, we must work harder to fill them. Today’s ever-constricting budgets at the National Institutes of Health and other government funders tend to favor established laboratories, leaving so much promising research unfunded. The average age of an NIH researcher has risen from 39 to 51 since 1982. This is why Susan G. Komen devoted half of its 2014 funding to early career researchers, with a goal to increase that funding by 30 percent in 2015, while continuing to fund the work of well-known scientists and labs. Now is not the time to leave our brightest, young scientific minds struggling for support.
This International Women’s Day I dare you to join with me in thinking big, in picturing a world where all women have access to the health care education and services they need. Together, we must dare to find and fund innovative, game-changing scientific research that makes life-saving treatments a reality for women in every corner of the world, and we must dare to envision bold, new global nonprofit collaborations—across sectors and among former competitors—to ensure that women everywhere are empowered in the fight against breast cancer.
The faces of those three young mothers in Tanzania and the motherless children of our own here at home are the reason we fight for a world without breast cancer. Picture it. I dare you.
Komen Funding Launches One Investigator’s Career as He Works to Prevent Breast Cancer Metastasis to the Brain
Blog post by Jamie Stanford, Ph.D., Komen Scientific Grants Manager
Susan G. Komen has funded over $135 million in research grants for young investigators. These research dollars are vital as funding for scientific research from the U.S. government becomes more limited, cut by more than $1 billion in the past 4 years. Young investigators are some of the hardest hit by funding cuts. In 2014, the National Cancer Institute funded less than one third of the grant applications submitted by young investigators. Taking on novel research ideas and working with fewer resources and years of experience, young investigators typically have lower success rates than senior investigators. Therefore, many are turning to non-government funding agencies like Susan G. Komen to jump-start their careers. To address this issue, Komen has dedicated itself to ‘Sustaining Progress in Cancer Research’ by funding nearly $16 million for young investigators alone in 2014.
Dr. Bisrat Debeb is just one of hundreds of young investigators whose careers were launched from Komen research funding. As a postdoctoral fellow in the laboratory of Dr. Wendy Woodward, Dr. Debeb’s Komen-funded project focused on understanding how small pieces of RNA (ribonucleic acid), called microRNAs, affect breast cancer metastasis to the brain. Under this fellowship, his training and successful results became the foundation for his career.
During his fellowship, Dr. Debeb and his Mentor, Dr. Woodward, developed new models of brain metastasis and discovered that when breast cancer cells express a microRNA called miR-141, they are more likely to spread (metastasize) to the brain. Likewise, reducing levels of miR-141 prevented breast cancer cells from spreading to the brain. Furthermore, they found that high levels of miR-141 in patient’s blood were associated with poor brain metastasis-free survival and low overall survival.
These studies indicate that miR-141 levels in a patient’s blood could be used to monitor cancer progression in patients diagnosed with metastatic breast cancer, and that reducing levels of miR-141 could help prevent metastatic spread to the brain.
Now, in his role as Assistant Professor in the Department of Radiation Oncology at The University of Texas MD Anderson Cancer Center, Dr. Debeb’s research is a continuation of this Komen-funded project. His studies focus on evaluating the therapeutic benefit of reducing miR-141 levels in order to prevent brain metastasis. Dr. Debeb and his colleagues have also begun to more specifically unveil how miR-141 causes breast cancer to spread to the brain.
Dr. Debeb’s contributions to research will bring more hope and options for patients, and his success, which began with data generated from a Komen-funded grant, has opened doors professionally. In fact, he was recently granted the highly competitive National Institute of Health Exploratory/Developmental Research Grant Award. He is also the recipient of the first Junior Investigator Grant from the Inflammatory Breast Cancer Network Foundation. With this new funding, Dr. Debeb will continue to expand upon the project he developed as a Komen postdoctoral trainee. The Komen Postdoctoral Fellowship award “…has been a critical component for my career development and has laid a solid foundation for establishing myself as an independent investigator in the field of breast cancer,” says Dr. Debeb.
Why do some women develop breast cancer and not others? And why do some women develop breast cancer at a much younger age? We know that factors like weight, alcohol consumption and hormone replacement therapy, among others, may affect breast cancer risk. But some women with one or more risk factors will never get breast cancer, while some women with no apparent risk factors will still develop the disease.
These questions prompted Komen grantee Dr. Clarice Weinberg, and her colleagues Drs. Dale Sandler and Lisa DeRoo, to conduct a study on how a woman’s genes and her environment might affect her risk of breast cancer. In 2008, the researchers launched the Two Sister Study, funded by Komen with a 5-year, $1.75 million grant, along with funding from the National Institute of Environmental Health Sciences (NIEHS).
The Two Sister Study builds upon the work of the Sister Study and focuses on women who developed breast cancer at a young age, with the idea that this group of women can help us learn a lot about the genetic and environmental causes of breast cancer. What makes the Two Sister Study unique is that it gathers data from sisters, who share similar genes and possibly environmental backgrounds.
The Two Sister Study enrolled over 1,400 women recently diagnosed with early-onset breast cancer (under the age of 50), 1,700 of their sisters from the Sister Study (who did not have breast cancer), and parents when possible. Participants provided detailed information about family and medical history, diet, occupation, as well as house dust and DNA samples. After collecting hundreds of samples and surveys from study participants, their sisters and families, Dr. Weinberg and her collaborators identified new potential risk factors for young women. Specifically, the research team found that women who were sensitive to certain hormonal changes differed in their risk for early-onset breast cancer.
They found that reduced risk was associated with:
- Fertility treatments to stimulate ovaries when it does not result in pregnancy.
- Night sweats and hot flashes in pre-menopausal women, which are symptoms typically associated with menopause.
- History of pregnancy-associated hypertension (high blood pressure).
- Hormone replacement therapy with estrogen alone.
Dr. Weinberg also found that women who suffered from menstrual migraines were less likely to develop hormone receptor negative breast cancer (estrogen receptor-negative and progestin-receptor negative). Together, these findings suggest that a young woman’s overall response to hormones during the different phases in her life may be related to her risk of developing breast cancer early.
The initial results from the Two Sister Study about a woman’s response to hormones add to our knowledge of breast cancer risk factors and early-onset breast cancer. Data from the study are still being analyzed in efforts to identify other risk factors for breast cancer. “The rich data (we have) developed through this family-based study offers a unique window on little-studied possible mechanisms,” says Dr. Weinberg. Data on genetic mutations that impact early-onset breast cancer will continue to be mined for years to come as scientists continue to identify both genetic and modifiable (e.g. behavioral) factors related to survival and good health in survivors of young onset breast cancer.
The genetic data collected through this research project are now publically available through the NIH’s CIDR dbGap website for researchers to use at: http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000678.v1.p1.
Jack Taylor: Senior Investigator, NIEHS
Dale Sandler: Chief, Epidemiology Branch and Principal Investigator, NIEHS
Lisa DeRoo: Staff Scientist, NIEHS and University of Bergen, Norway
Clarice Weinberg: Chief, Biostatistics & Computational Biology Branch and Principal Investigator, NIEHS Stephanie London: Deputy Chief, Epidemiology Branch and Principal Investigator, NIEHS
Paula Juras: Project Officer, NIEHS
Guest blog by Komen grantee Dr. Lisa A. Newman, MD, MPH, FACS, Professor of Surgery and Director of the Breast Care Center for the University of Michigan in Ann Arbor, Michigan. Dr. Newman has dedicated her career to fighting breast cancer disparities. Named one of the 2012 Michiganians of the Year, she was also featured on CNN’s 2009 documentary “Black in America 2.” She was even called a “Breast Cancer Hero” in the October 2012 issue of Oprah Magazine.
I am honored to celebrate Black History Month by sharing what I have learned over my career as a surgical oncologist studying the many factors that contribute to disparities in breast cancer outcome, especially as they relate to triple negative breast cancer and African ancestry.
When my training as a surgeon first began (more than twenty years ago), it was widely assumed that the higher breast cancer mortality rates observed in the African-American population were completely explained by the more prevalent socioeconomic disadvantages in this community, with its related diagnostic and treatment delays. Unfortunately, these socioeconomic factors persist today, and they undeniably play a major role in causing tragically higher degrees of pain and suffering from breast cancer.
Over the past few decades, however, we have also made tremendous advances in understanding breast tumor subtypes, and we have learned that African Americans face an increased risk for being diagnosed with more aggressive breast cancers, such as triple negative breast cancer (TNBC). Today, the study of breast cancer disparities related to racial/ethnic identity includes investigations of hereditary genetics and tumor genomics, as well as socioeconomic and health care access inequities.
Although my clinical responsibilities are based in Michigan, my research has led me to sub-Saharan Africa, to learn about the breast cancer burden of women that have shared ancestry with African-Americans dating back to the colonial slave trade era. I have had the privilege of working with the oncology team at the Komfo Anoyke Teaching Hospital in Kumasi, Ghana, for nearly ten years.
What we have learned is striking: similarities indeed exist between the breast cancers identified in Ghanaians and those detected in African Americans. TNBC accounts for approximately 15% of the tumors seen in White American and European patients; approximately 30% of those in African Americans, and the majority of those seen in Ghanaian breast cancer patients. Funding from Susan G. Komen has enabled us to document these patterns and has also supported our studies of novel patterns of expression for molecular markers that are associated with mammary stem cell and TNBC progression, such as EZH2 and ALDH1. This work has also led to a platform for creating a library of patient derived xenografts (PDXs) from TNBC patients of internationally diverse backgrounds. These PDXs are an exciting model for studying the biology of TNBC and treatment sensitivity that can more easily be studied by many scientists for years to come.
Our work at Komfo Anoyke has also provided wonderful opportunities for academic and educational exchange experiences, strengthening our efforts to improve breast cancer survivorship on both sides of the ocean. Students and trainees from the University of Michigan routinely participate in our research trips to Ghana, which have been partly funded by Komen, and our Komfo Anoyke colleagues come to Michigan regularly to participate in research projects and to learn about the latest strategies in breast cancer treatments. One of the Komfo Anoyke surgeons is currently nearing completion of her PhD work in Cancer Biology at the University of Michigan, after which she will return to Ghana to establish an independent Kumasi-based laboratory.
We have also invested in a state-of the-art, internet-based telemedicine conference facility at Komfo Anoyke. This program allows us to host ongoing live weekly meetings and educational conferences, uniting our teams in Michigan and at Komfo Anoyke as one, overcoming the thousand-mile geographic separation to review cases and strategize the treatments that will best benefit our patients.
Our international breast cancer research program now works with three different hospitals in Ghana, and we are also in the process of obtaining approvals for participating sites in Ethiopia, India, and China.
Research has brought us many clues about the origins of breast cancer, and why it may affect some groups of women differently. But there is still much to learn about the biology of breast cancer that affects women of African Ancestry. I am pleased that our work, which began in Michigan, continues to be strong in Ghana and is now spreading to other African countries.
Read a recent Komen Perspectives article on triple negative breast cancer (TNBC).
Learn more about Komen’s work on breast cancer disparities in our Mission Fast Facts.