Musa Mayer ,  MS, MFA Patient Advocate AdvancedBC.org Living with Advanced Breast Cancer: Challenges and Opportunities
The Global Burden  of Advanced Breast Cancer <ul><li>More than half a million deaths worldwide  </li></ul><ul><li>Populati...
What I learned from Miriam, Pat and Penny <ul><li>The needs of people living with metastatic breast cancer are profoundly ...
Lost in a sea of pink <ul><li>“ We are what the pink crowd want to forget because we are the painful reminders of what can...
Making a difference
<ul><li>Advances in management and treatment  have led to longer survival, with improved QOL </li></ul><ul><li>But life wi...
Do ABC patients count? <ul><li>Prevalence of metastatic breast cancer is unknown </li></ul><ul><ul><li>In US, distant recu...
Asking the experts:  Two surveys on living with ABC <ul><li>LBBC online survey of 618 patients,  focused on assessment of ...
BRIDGE Survey findings <ul><li>On MBC diagnosis, most reported feeling scared (80%),  confused (66%), depressed (66%), ang...
Information and resilience <ul><li>76% in BRIDGE survey said they took an active role in seeking information, and 81% said...
Communities of support
<ul><li>Make ABC patients count by counting them </li></ul><ul><li>Societal will and public health priorities </li></ul><u...
<ul><li>We should not settle for new treatments that do not actually make a difference by  extending life  and  improving ...
Guidelines <ul><li>Evidence-based consensus guidelines: </li></ul><ul><li>Account for individual differences and patient p...
 
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ABC1 - M. Mayer - Keynote lecture: Living with the Advanced Breast Cancer: Challenges and opportunities

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ABC1 - M. Mayer - Keynote lecture: Living with the Advanced Breast Cancer: Challenges and opportunities

  1. 1. Musa Mayer , MS, MFA Patient Advocate AdvancedBC.org Living with Advanced Breast Cancer: Challenges and Opportunities
  2. 2. The Global Burden of Advanced Breast Cancer <ul><li>More than half a million deaths worldwide </li></ul><ul><li>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 </li></ul><ul><li>Populations with poor access to care: late-stage diagnosis is common, and prognosis worse </li></ul><ul><li>Disproportionate increases in cancer incidence projected in low resource countries </li></ul>WHO, 2008 O’Shaughnessy, The Oncologist, 2005 WHO. Cancer Fact Sheet, 2011
  3. 3. What I learned from Miriam, Pat and Penny <ul><li>The needs of people living with metastatic breast cancer are profoundly different from patients and survivors with early-stage disease </li></ul><ul><li>Breast cancer advocacy and support has offered little to women with MBC </li></ul><ul><li>Online and in person, MBC patients value contact with one another </li></ul><ul><li>Interviewed 25 MBC patients and 10 spouses for a book about living with advanced disease </li></ul><ul><li>Published 1997, now online at AdvancedBC.org </li></ul>
  4. 4.
  5. 5. Lost in a sea of pink <ul><li>“ We are what the pink crowd want to forget because we are the painful reminders of what can happen.” </li></ul>
  6. 6. Making a difference
  7. 7. <ul><li>Advances in management and treatment have led to longer survival, with improved QOL </li></ul><ul><li>But life with “mets” is challenging </li></ul><ul><ul><li>Managing continuous treatment, symptoms and side-effects </li></ul></ul><ul><ul><li>Coping with emotional and physical impact of progression and repeated treatment failures </li></ul></ul><ul><ul><li>Dealing with loss of function and roles within family, work and community </li></ul></ul><ul><li>Medical, economic and psychosocial burden of metastatic breast cancer cannot be overestimated! </li></ul>Progress, but…
  8. 8. Do ABC patients count? <ul><li>Prevalence of metastatic breast cancer is unknown </li></ul><ul><ul><li>In US, distant recurrence is not captured by cancer registries, only Stage IV initial diagnosis </li></ul></ul><ul><ul><li>Low-resource countries uncertain registry quality </li></ul></ul><ul><li>Estimates double or triple annual deaths, using estimated median survival as guide </li></ul><ul><li>When the scope of a need cannot be documented, provision of services is poor </li></ul>
  9. 9. Asking the experts: Two surveys on living with ABC <ul><li>LBBC online survey of 618 patients, focused on assessment of needs for information, support and practical services </li></ul><ul><li>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 </li></ul>Seminars in Oncology Nursing (26) 3, 2010 Community Oncology, Sep. 2010
  10. 10. BRIDGE Survey findings <ul><li>On MBC diagnosis, most reported feeling scared (80%), confused (66%), depressed (66%), angry (57%), and alone (55%) </li></ul><ul><li>98% received enough emotional support from their “inner circle” of family, friends and community </li></ul><ul><li>Yet 38% reported anxiety about being open about their disease, and 48% said friends and family were uneasy talking about it with them </li></ul><ul><li>75% wanted contact with other metastatic patients </li></ul><ul><li>52% felt MBC received too little consideration, higher in countries where resources for EBC exist </li></ul><ul><li>Only 24% felt existing resources addressed their needs </li></ul>
  11. 11. Information and resilience <ul><li>76% in BRIDGE survey said they took an active role in seeking information, and 81% said they were active in treatment decision-making </li></ul><ul><li>73% in LBBC survey sought information on a daily or weekly basis, especially when facing treatment choices, disease progression, side effects and symptoms </li></ul><ul><li>For most, information-seeking is adaptive, offering a sense of control and reducing anxiety </li></ul><ul><li>Patients demonstrate resilience: </li></ul><ul><ul><li>LBBC Survey: Despite high reported levels of side-effects and symptoms, only 20% found daily routines difficult </li></ul></ul><ul><ul><li>BRIDGE Survey: 59% recognized the negative impact of the disease on their lives, yet 74% reported still being able to enjoy their lives </li></ul></ul>
  12. 12. Communities of support
  13. 13. <ul><li>Make ABC patients count by counting them </li></ul><ul><li>Societal will and public health priorities </li></ul><ul><li>Universal access to quality medical care and compliance with treatments will save and extend many lives </li></ul><ul><li>Basic and translational research funding for metastasis and metastasis prevention must be increased and strategically focused </li></ul><ul><li>Clinical trials must be rethought </li></ul><ul><ul><li>Less restrictive entry criteria </li></ul></ul><ul><ul><li>Full integration of validated QOL and PRO measures </li></ul></ul><ul><ul><li>Novel endpoints that address colonization and outgrowth of micrometastases, rather than tumor shrinkage </li></ul></ul>Much remains to be done
  14. 14. <ul><li>We should not settle for new treatments that do not actually make a difference by extending life and improving quality of life </li></ul><ul><li>Increases in median survival have been driven by targeted treatments for subtypes of cancer </li></ul><ul><ul><li>Co-development of drugs and companion diagnostics </li></ul></ul><ul><li>Metastatic breast cancer cannot yet be considered a chronic disease, as patients understand the term </li></ul><ul><ul><li>Avoid trivializing a still deadly disease </li></ul></ul><ul><ul><li>Overstated progress may discourage resource allocation </li></ul></ul><ul><ul><li>Can we turn “chronic” into reality? </li></ul></ul>Survival and “chronic” disease
  15. 15. Guidelines <ul><li>Evidence-based consensus guidelines: </li></ul><ul><li>Account for individual differences and patient preferences </li></ul><ul><li>Help patients manage confusion, anxiety and loss of confidence in medical care </li></ul><ul><li>Make sense of divergent opinions </li></ul><ul><li>Strive to meet ABC1 goal: </li></ul><ul><li>“… improving survival in patients with advanced breast cancer through better use of available knowledge and therapies” </li></ul>

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