Home: Educational Supplement: Appendix

Side Effects, Quality-of-Life Issues, and Tradeoffs
in Adjuvant Therapy for Breast Cancer:
The Patient Perspective

Amy S. Langer, M.B.A.

In the past decade, increasing utilization of screening mammography and clinical breast examinations has resulted in a stage shift to earlier disease presentation—unfortunately, primarily among insured and higher-income women. This positive public health trend, together with recent significant advances in the variety and effectiveness of systemic therapy options, has produced more favorable outcomes from adjuvant treatment for many patient groups. However, when they have had a recent diagnosis of invasive breast cancer and are still in the initial phase of shock and dismay, most women are unprepared to make the often complex tradeoffs and challenging decisions about adjuvant treatment that rapidly follow initial diagnosis.

Women with early-stage breast cancer are a highly heterogeneous population. They differ not only by disease and demographic characteristics, such as age, culture, language, income, insurance, and employment status, but also by personal responses and circumstances, including partner/family status and available emotional and social support; personal attitudes and values about their breasts, cancer, and disease; the ability to make decisions based on quantitative factors and abstraction; and how they define survival with an “acceptable” or “good” quality of life. Women also have markedly different physical and emotional responses to therapy, both in the manner and degree in which they experience side effects and their sensitivities to any particular side effect, so that an effect of passing annoyance to one woman may be virtually disabling to another.

Science is currently lacking adequate and effective predictive and prognostic factors— tools to accurately project (and monitor, on the micro level) disease response to any one treatment in an individual patient, and to predict her sensitivity to its side effects. Adjuvant therapy for breast cancer has been prescribed based on patient populations—a “macro” approach that overtreats some women who might be cured with less, different, or no therapy, and undertreats others whose disease recurs, with the population of each group only apparent in retrospect. This is only just beginning to change. Significant improvements are yet to be made in individualizing therapy for each woman so that her treatment is most likely to produce maximal disease response and minimal side effects.

Improvements are also needed in methods of educating and communicating about treatment options. Ultimately, improved knowledge about these important aspects will assist women and health care professionals in the shared task of selecting (or rejecting) approaches to adjuvant treatment, taking into account the individual patient’s personality, preferences, and priorities, and her attitudes about tradeoffs, side effects, and quality of life.

Adding to these limitations are pressures in the clinic that result in reduced time spent discussing treatment approaches (and clinical trial options) with patients. Oncology professionals are facing economic stressors, a growing patient volume, and additional clinical administrative requirements. While nurses and other healthcare professionals must juggle increased patient volume and additional tasks, the historic job of offering emotional support and practical suggestions, patient education, and information exchange is receiving lower priority. With the growth of the World Wide Web and as cancer and breast cancer Web sites, chatrooms, and other electronic resources multiply, and in the era of direct-to-patient advertisements for oncology products in lay publications and on television, patients have more and varied opportunities to receive information, misinformation, anecdote, and opinion about breast cancer and its treatment.

Patient and lay access to information resources also now includes the same clinical trial directories, medical journal articles, and professional medical meeting real-time reports and abstracts that were until recently the exclusive territory of trained oncology professionals. However, patients and their families need and want authority and guidance about how to use breast cancer education and information safely and well. Consumers require expert assistance to separate fact from myth, chat, and personal stories, and to help them digest and assess the quality and relevance of the huge, often overwhelming volume of medical and treatment information suddenly so available both off- and online.

Meanwhile, many groups of breast cancer patients—those whose native language is not English, and members of lower-income and lower-literacy populations—are being marginalized by an electronic information explosion that so far is of limited value to them, and to which they have limited access. Although government and private support is growing for early breast cancer detection programs among low-income women and special populations, this same cultural competence has not yet widely extended past screening into diagnosis and treatment programs. As a result, when they have the good fortune to experience early diagnosis, studies have shown that state-of-the-art adjuvant treatments for breast cancer are neither offered to, nor chosen by, medically underserved women sufficiently often.

Finally, in an effort to gather insight to assist the patient and her physician in making the best adjuvant therapy decisions for breast cancer in the current clinical era, we should examine the current relevance, value, and utility of the traditionally underfunded, underattended-to studies that exist on the topic of patient decision-making, risk assessment, and choice. The little data there is about individual patient factors and decision-making as it affects adjuvant therapy decisions were collected in a very different era—when many of the improved options for adjuvant treatment and side effects management did not exist, when patients were less informed and participatory, and when there were fewer breast cancer information resources and support and acquisition styles. Quality of life factors and patient decision-making measurements have traditionally been reduced to dry mathematical formulas rather than patient-centered interactive measurements that use tools such as controlled self-assessments over time. With additional funding and advocacy/patient/academic collaboration, this is an area that may require entirely new research approaches.