Musa Mayer, MS, MFAPatient Advocate

AdvancedBC.org

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Living with Advanced Breast Cancer: Challenges and Opportunities

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The Global Burden of Advanced Breast Cancer• More than half a million deaths worldwide • Populations with best access to care: up to 30% of

early stage breast cancers still recur as distant metastatic disease—incurable, progressive, and ultimately fatal

• Populations with poor access to care: late-stage diagnosis is common, and prognosis worse

• Disproportionate increases in cancer incidence projected in low resource countries

WHO, 2008O’Shaughnessy, The Oncologist, 2005WHO. Cancer Fact Sheet, 2011

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What I learnedfrom Miriam, Pat and Penny• The needs of people living with metastatic breast

cancer are profoundly different from patients and survivors with early-stage disease

• Breast cancer advocacy and support has offered little to women with MBC

• Online and in person, MBC patients value contact with one another

• Interviewed 25 MBC patients and 10 spouses for a book about living with advanced disease

Published 1997, now online at AdvancedBC.org

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Making a difference

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• Advances in management and treatment have led to longer survival, with improved QOL

• But life with “mets” is challenging– Managing continuous treatment, symptoms and

side-effects– Coping with emotional and physical impact of

progression and repeated treatment failures– Dealing with loss of function and roles within family,

work and community• Medical, economic and psychosocial burden of

metastatic breast cancer cannot be overestimated!

Progress, but…

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Do ABC patients count?

• Prevalence of metastatic breast cancer is unknown– In US, distant recurrence is not captured by cancer

registries, only Stage IV initial diagnosis– Low-resource countries uncertain registry quality

• Estimates double or triple annual deaths, using estimated median survival as guide

• When the scope of a need cannot be documented, provision of services is poor

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Asking the experts: Two surveys on living with ABC

• LBBC online survey of 618 patients, focused on assessment of needs for information, support and practical services

• BRIDGE survey of 1,342 patients in 13 countries, half low-resource, sought broader patient sample, also asked about societal attitudes, stigma, psycho-social coping and clinical trials participation

Seminars in Oncology Nursing (26) 3, 2010Community Oncology, Sep. 2010

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BRIDGE Survey findings

• On MBC diagnosis, most reported feeling scared (80%), confused (66%), depressed (66%), angry (57%), and alone (55%)

• 98% received enough emotional support from their “inner circle” of family, friends and community

• Yet 38% reported anxiety about being open about their disease, and 48% said friends and family were uneasy talking about it with them

• 75% wanted contact with other metastatic patients• 52% felt MBC received too little consideration, higher in

countries where resources for EBC exist• Only 24% felt existing resources addressed their needs

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Information and resilience• 76% in BRIDGE survey said they took an active role in

seeking information, and 81% said they were active in treatment decision-making

• 73% in LBBC survey sought information on a daily or weekly basis, especially when facing treatment choices, disease progression, side effects and symptoms

• For most, information-seeking is adaptive, offering a sense of control and reducing anxiety

• Patients demonstrate resilience:– LBBC Survey: Despite high reported levels of side-effects

and symptoms, only 20% found daily routines difficult– BRIDGE Survey: 59% recognized the negative impact of the

disease on their lives, yet 74% reported still being able to enjoy their lives

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Communities of support

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• Make ABC patients count by counting them• Societal will and public health priorities• Universal access to quality medical care and compliance

with treatments will save and extend many lives• Basic and translational research funding for metastasis

and metastasis prevention must be increased and strategically focused

• Clinical trials must be rethought– Less restrictive entry criteria– Full integration of validated QOL and PRO measures– Novel endpoints that address colonization and outgrowth

of micrometastases, rather than tumor shrinkage

Much remains to be done

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• We should not settle for new treatments that do not actually make a difference by extending life and improving quality of life

• Increases in median survival have been driven by targeted treatments for subtypes of cancer– Co-development of drugs and companion diagnostics

• Metastatic breast cancer cannot yet be considered a chronic disease, as patients understand the term– Avoid trivializing a still deadly disease– Overstated progress may discourage resource

allocation– Can we turn “chronic” into reality?

Survival and “chronic” disease

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Guidelines

Evidence-based consensus guidelines:•Account for individual differences and patient preferences•Help patients manage confusion, anxiety and loss of confidence in medical care•Make sense of divergent opinions•Strive to meet ABC1 goal: “…improving survival in patients with advanced breast cancer through better use of available knowledge and therapies”