Living with Advanced Breast Cancer: Challenges and Opportunities

Musa Mayer , MS, MFA Patient Advocate AdvancedBC.org Living with Advanced Breast Cancer: Challenges and Opportunities

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

What I learned from 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

Making a difference

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…

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

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, 2010 Community Oncology, Sep. 2010

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

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

Communities of support

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

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

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”

http://www.advancedbc.org	1056
http://advancedbc.org	682
http://www.sharecancersupport.org	213
http://translate.googleusercontent.com	7
http://www.sharecancersupport.org:80	2
http://admin.advancedbc.org	1

Living with Advanced Breast Cancer: Challenges and Opportunities

by bkling on Jan 03, 2012

Accessibility

Categories

Tags

Upload Details

Usage Rights

6 Embeds 1,961

Statistics

Living with Advanced Breast Cancer: Challenges and Opportunities — Webinar Transcript