Editor’s Note: BCAction attended the San Antonio Breast Cancer Symposium in December 2013 to bring a patient-focused voice to the proceedings, to challenge the status quo, report findings back to you, and to push researchers and clinicians to do better for women at risk of and living with breast cancer. For Karuna Jaggar’s reporting from SABCS about breast cancer research and treatment, click here.
By Zoë Christopher, Information and Resources Liaison
As BCAction’s Resource Liaison, I handle about 500 calls, emails and inquiries every year. Many are from women making difficult decisions after receiving a breast cancer diagnosis – a diagnosis that carries serious social, psychological, and physical implications. I listen to their stories, often heart-wrenching and challenging, talk them through the pathology reports and diagnostic jargon, and help get the information and resources they need to make well-informed decisions about their health.
Every year, Breast Cancer Action attends the San Antonio Breast Cancer Symposium (SABCS), the largest breast cancer conference in the world, where new research is unveiled and discussed. Over the years, I’ve been reluctant to attend. Why? I was concerned that the industry’s emphasis on both pharmaceutical-funded science and what I perceive as an emphasis on profits over people would further inflame my frustrations with the field, what we frequently refer to as “the cancer industry.” But in December of 2013, I bit the bullet and, along with our executive director Karuna Jaggar, spent five days in San Antonio. The experience provided me some encouragement as well as a sense of urgency.
I’ve been part of the breast cancer world for seven years and was reminded that not too long ago, before Herceptin, HER2 positive breast cancer was virtually untreatable. Over the last 20 years, there have been major breakthroughs and progress in diagnosis and treatment resulting in better survival rates, but not much attention has been paid to the psychosocial impact of diagnosis and treatment on patients.
All too often, the psychosocial impacts of breast cancer remain the hidden and personal experiences of the women I am in contact with every day. People may call for information that will help them make decisions, but the personal impact of their diagnosis and treatment, the emotional and psychological weight of these decisions, isn’t always obvious to me. And I am sure it remains hidden and/or unaddressed by their doctors. Often, when I hang up the phone, I wonder, when we’re disconnected, “How is she right now?” When the woman I was speaking to hangs up and is alone again with the palpable reality of her diagnosis, when she isn’t trying to hold it together in order to talk to me, how is she then?
Dr. Lesley Fallowfield, professor of Psycho-oncology at Brighton & Sussex Medical School, University of Sussex in the U.K. and a presenter at SABCS 2013, calls for better allocation of resources devoted to psychosocial support related to survivorship. Given the progress in diagnosing and treating the disease, she now considers breast cancer to be an emotional emergency, not the medical emergency it once was.
In San Antonio, every morning I sat through a marathon of 15-minute presentations on various clinical trials, wading through the dense science. I spent my afternoons at the BCAction table, surrounded by the booths of pharmaceutical behemoths like Genentech and Eli Lilly. I loved this part of my SABCS experience because I got to meet and speak with many breast cancer patients, members of BCAction, and patient advocates, all passionate about ending this epidemic, developing more effective and less toxic treatments, and preventing this disease in the first place. At one point, after my exuberant explanation of all our good work, the researcher I was talking to smiled broadly. “I love you guys,” she whispered. “How did you ever get in here?” I understood exactly what she meant: at this huge, industry-dominated conference, BCAction is something of “the thorn in the side” of the breast cancer industry.
With session titles like “Final analysis of a phase II 3-arm randomized trial of neoadjuvant trastuzumab or lapatinib or the combination of trastuzumab and lapatinib, followed by six cycles of docetaxel and carboplatin with trastuzumab and/or lapatinib in patients with HER2+ breast cancer,” it’s easy for me to feel that patients, women that BCAction serves and advocates for, are lost in the science. Yes – today there are more clinical nurse specialists, counselors, and psycho-oncologists. There are more psychotherapists who specialize in the unique needs of breast cancer patients, and we’re slowly improving the psychosocial safety net for patients. Dr. Susan Love refers to the current way we tackle breast cancer in this country as “slash, burn and poison.” I’m convinced that the consequences of this approach are emotional and psychological, just as much as they are physical. We mustn’t allow the traumatic impact associated with a breast cancer diagnosis to be minimized or lost in cheerful pink ribbon campaigns. Only if we hear and honor the very real consequences of toxic cancer treatments will we have any hope of creating better ones.
Anyone who has personally experienced breast cancer or knows someone who has experienced this disease is fully aware that a woman’s quality of life is deeply impacted by treatment. This often includes a prolonged period of being unable to work, or an inability to return to work following the completion of her treatment. The toll of the combination of financial, physical, emotional and psychological crises is often depression, with resulting fatigue and overwhelming anxiety, which if not addressed and managed, frequently results in poor adherence to treatment or maintenance protocols. Often a woman’s entire social network is affected as friends pull away, coworkers disappear, and family members wrestle with a sense of helplessness. She may become withdrawn and anti-social; she may struggle against a sense of dependency or burden; and issues around sexuality are common. None of this is conducive to healing, no matter what her doctors say about how her physical body is responding.
A breast cancer diagnosis can produce anxiety and symptoms of acute adjustment disorders, but the support needs of breast cancer patients can be satisfied through a diverse range of techniques. The latest research makes clear the benefits of non-pharmaceutical interventions. Yoga, massage, visualization techniques, art and music therapies, cognitive behavioral therapy, and mindfulness-based stress reduction improve both emotional states and endocrine-related symptoms, and aerobic exercise reduces fatigue. These were once relegated to alternative or “fringe” modalities, but data now points to the benefits of including them in an integrative treatment protocol.
For some women, a breast cancer diagnosis is no longer the death sentence it once was – women are living longer. At SABCS I found some deeply passionate and committed doctors who presented promising data on treatment for triple negative breast cancer; on the use of bisphosphonates to reduce the risk of metastases in post-menopausal women; and on ways of preventing over-treatment. But I also heard their frustrations at being committed to important work while struggling in a broken healthcare system. This system has also failed to recognize a patient as a whole person whose healing needs are taking place on every level that is impacted by this disease, not just the site of the tumor.
Dr. Fallowfield envisions a future in which a patient enters a clinic, has her tests done, and then completes a quality-of-life survey and symptom checklist. Such information would enable her physician to prescribe and refer her to the supportive services that may actually promote an integrated and complete healing. Such a patient-centered treatment plan will address not only the disease of breast cancer, but the psychosocial healing and well-being of the whole person. I for one am excited to see such a much-needed practice become a reality.
I feel a sense of renewed urgency after attending SABCS that comes from knowing more about the private side of this disease, and wanting patients to have every opportunity to live as fully as possible with minimal permanent impact from treatment. It’s extremely helpful to me to know there are some really good people out there, doing really good work with this end also in mind.