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1. Psychosocial distress

Psychological health is a major focus of quality of life assessment, and for good reason. As
one researcher points out: “When a person has incurable disease, optimizing quality of life
and meeting the woman’s psychosocial and information needs must be central to excellent
care” [39] . Yet studies have shown that the majority of patients with MBC experience significant
emotional distress [40-42] . Some estimates are that as many as one third of MBC patients suffer
from mood disorders such as major depression and anxiety, and one quarter experience mild
depression [39, 42-44] . The scores on validated quality of life tests are much worse among MBC
[4]
patients than in the overall population or even among patients with other serious illnesses .
Even more troubling, professional follow-up and mental health referrals for MBC patients from
providers are often lacking [45] .

Researchers have applied differing theoretical constructs to examine sources of emotional
distress. An analysis of 26 quantitative and qualitative studies of MBC patients [46] found
uncertainty and lack of control to be an overarching theme. Other sources of distress were
fear of disease progression and death, grief over impending losses, worry over the impact on
family members, and the sense of the disease as a “ticking time bomb,” with patients waiting for
treatment to fail and the MBC to progress. The theme of loss is
pervasive, from the
The theme of loss is pervasive, from the loss of femininity, sexuality, and attractiveness to loss of femininity,
loss of roles in family and community to loss of dignity and independence as the disease sexuality, and
progresses. Many women with MBC mourn the loss of their ability to actively care for their attractiveness to
loss of roles in family
families and experience acute anguish about leaving their children without mothers and their and community to
spouses without partners. Those who are nurturers may find the pain their cancer inflicts on loss of dignity and
the people they love hard to bear. independence as the
disease progresses.
Surveys also confirm that MBC patients have significant emotional distress and indicate that
access to mental health services is often either lacking or is not pursued by patients who could
benefit [57] . Although most surveyed patients believe they are coping well [58] , a substantial
minority report symptoms of depression and anxiety, which often go untreated. Emotional
distress tends to worsen with disease progression, as symptoms and side effects increase [57] .

Patients and family members struggle with anticipatory grief and making end-of-life plans, often
feeling alone [59] . Loss of control is part of the distress most patients feel [46] . A patient’s sense
of control can be enhanced in a number of ways: by becoming well-informed about the illness
and its treatments; through immersion in meaningful tasks, including continuation of work that
offers satisfaction and financial support; through realistic planning for the future; by seeking
social support; and by caring for one’s family. Many patients speak of having discovered a new 63
sense of meaning, having a new appreciation of how their time is precious, cherishing time with
their loved ones, and looking forward to significant events.