In her article on the psychological and social aspects of breast cancer, Dr. Ganz pays fitting tribute to the pioneering and prescient efforts of a great man who tried hard to bring more humanity into the management of the disease. Borne out of his own personal experiences as a 12-year-old watching his own mother cope with disfiguring surgery for breast cancer, Dr. Abeloff had a passionate desire to combine excellent science with art (hence, his famous Art of Healing program).
Dr. Ganz’s article also highlights the extraordinary changes in diagnostics and treatment that have taken place over the past 3 decades, discussing just some of the physical and psychosocial challenges and burdens that these have created.
Better access to clinics with sophisticated diagnostic procedures now permit earlier diagnosis, thereby improving the likelihood of more successful outcomes from treatment. Surgical techniques generally are less radical, and better reconstruction has helped many women who previously found it impossible to deal with the body image assault caused by mastectomy, or hated the nuisance factor of an external prosthesis. Sentinel node biopsy has reduced unnecessary resection of the axilla and markedly reduced arm morbidity without sacrificing staging accuracy.
Radiotherapy is now delivered more quickly and with less damage to other structures. We also await results from ongoing trials of intraoperative radiotherapy that might further obviate the need for external radiotherapy. Targeted adjuvant therapy and less toxic chemotherapy (or effective drugs to ameliorate such adverse reactions as nausea and vomiting) means that patients can often continue to work or continue with their everyday lives more easily than in the past.
Information and Support
Information provision has expanded in a way that was totally unimaginable in the early days of Dr. Abeloff’s practice, when patients had little access to Internet technology or the plethora of information sources currently provided by the media, hospitals, breast cancer charities, and support groups. It is hard to conceive of how women once managed without the help and support provided routinely now by specialist breast cancer nurses.
It is perhaps disappointing to note, therefore, that levels of anxiety and depression remain high. Despite so many improvements and major advances in treatment, which mean that large numbers of women with breast cancer worldwide now have a realistic prospect of living either cured of their disease or living longer following recurrence with a good quality of life, around 25% of women still experience significant psychological morbidity.
Dr. Ganz describes the risk factors for poor coping and adaptive disorders and quite rightly comments on the need for better recognition of psychological and social distress and appropriate provision of both formal and informal support services. These are a vital part of quality cancer care, but maybe we should concentrate more on preventing patients from needing more support services in the first place.
A few areas in Dr. Ganz’s excellent article are perhaps worthy of elaboration, when considering the impact that breast cancer exerts on a woman’s overall well-being—in particular, the effect of communication and information on decision-making and adjustment and the need for more timely ameliorative interventions to help patients who experience unpleasant side effects of treatment.
Information and Communication
Dr. Ganz comments on the huge numbers of people who might now be involved in the modern day care of a woman with breast cancer. Although there has been much more emphasis on the need for training in effective communication skills, and evidence-based courses exist to improve these, most concentrate on dyadic exchanges between a patient and her nurse or physician. Breast cancer care is a serious team business, and women can become confused and anxious by the lack of continuity, consistency, or congruency of information given by different members of the health-care team.
With societal changes, women are no longer regarded as passive recipients of paternalistic care, and shared decision-making between a woman and her surgeon or oncologist about treatment is the norm. Studies have shown, however, that there is often a mismatch between an individual woman’s preferred level of involvement and the role she actually plays when choosing among surgical options.
A very clear distinction also needs to be made between provision of adequate information and decision-making. The appropriateness of any decision depends on the type of information given and the manner in which it is delivered. Again, this requires excellent communication skills and patient centeredness. An undergraduate lecture on the biology of cancer and the way in which aromatase inhibitors work might be appropriate for a few, but this is unlikely to be as pertinent for most women as would information about the impact of therapy on joint pains, vaginal dryness, or libido.
Although most clinical trials of breast cancer treatments have quality-of-life subprotocols, the information from these—which might be of great interest to women and influence decision-making—is often published much later than the main study. Quality-of-life data are rarely discussed by physicians, who still seem more comfortable with physician-reported data about side effects than patient-reported outcomes.
Better, more efficacious treatments that reduce the threat of recurrence nevertheless bring with them extra stressors and burdens, in terms of side effects and the need for extended therapy. For example, many women with estrogen receptor–positive early breast cancer who have had good surgery and radiotherapy now face a further 5 to 10 years of endocrine therapy. The side effects of this treatment could be seen as more than just a transient inconvenience.
Research on ameliorative interventions to help with these non–life-threatening but quality-of-life–threatening side effects is vital to ensure adherence. Disturbing evidence suggests that optimal adherence is compromised if side effects are not viewed seriously by a woman’s health-care providers. This is true in chemoprevention trials, in community oncology practice settings, in adjuvant settings, and in women with more advanced disease. In addition to the often unrecognized problem of nonadherence when side effects are not dealt with, further complications may arise when women take nonprescription drugs and remedies that could seriously interfere with their anticancer treatments.
Breakthroughs in the prevention of breast cancer—another research interest of Dr. Abeloff’s—will be difficult to realize fully unless we can develop better ways of ameliorating the iatrogenic harms produced by our current drugs.
—Lesley Fallowfield, BSc, DPhil
Financial Disclosure: The author has no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.