Presenter: Paula Miller

• Who is the initiative team?

• What are the facts of Young Women and breast cancer in Arizona?

• What needs were identified in young breast cancer survivors in Arizona?

• Where do patients access resources and financial assistance in Arizona?

• What is the Arizona Breast Cancer Resource Guide?

Overview

Who is the Arizona Young Breast Cancer Survivor Support Initiative team?

MEET THE TEAM

Project Manager• Diagnosed with breast cancer at age 25• Advocate for breast cancer awareness among

young women• MPA in Healthcare Administration• Certified Recreational Therapist• Member - Arizona Comprehensive Cancer

Control Program, Quality of Life Workgroup• State Leader - Young Survival Coalition

Mikala Edwards, MPA, CTRS

What are the facts of Young Women and breast cancer in Arizona?

STATE CANCER FACTS

2009 State Breast Cancer Statistics

213 women diagnosed between ages 0-39 years

– 54.5% of cases were early stage*– 41.8% of cases were late stage*– 31.8% of cases were unknown stage

*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage

2009 Statistics by Race/Ethnicity

67.90% 63.70% 67.60% 64.40%

26.40% 28.90% 23.40% 29.90%

5.70% 7.40% 9.00% 5.70%

20.00%

0.00%

40.00%

60.00%

80.00%

100.00%

120.00%

White Non- Hispanic

White Hispanic

Black American Indian

Unknown Stage

Late Stage

Early Stage

*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage

2010 State Breast Cancer Statistics

219 women diagnosed between ages 0-39 years

– 42.5 % of cases were early stage*– 48.4% of cases were late stage*– 31.8% of cases were unknown stage

*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage

2010 Statistics by Race/Ethnicity

67.60% 63.00% 58.00% 59.80%

26.20% 28.60% 37.00% 28.90%

6.20% 8.40% 5.00% 11.30%

20.00%

0.00%

40.00%

60.00%

80.00%

100.00%

120.00%

White Non- Hispanic

White Hispanic

Black American Indian

Unknown Stage

Late Stage

Early Stage

*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage

Cooperative Agreement with the Centers for Disease Control and PreventionABOUT THE PROGRAM

– Reduce the female breast cancer death rate

• Three year agreement between CDC and John C.Lincoln Health Foundation

• Develop support and education awareness for young (<45 years of age) breast cancer survivors, their families and caregivers

• Develop educational resources to increase patientand provider knowledge

• Align with Healthy People 2020– Increase the proportion of cancer survivors who report physical

health-related quality of life similar to the general population

CDC Cooperative Agreement

Process Overview

• Provide input on functionality of website

• Identify needs of YBCS in Arizona• Establish steering committees to help

guide program– AYBCSOC

• Write & distribute needs assessment-statewide• Analyze needs assessment results• Vote on top priorities

– ABC Committee• Collaborate on available resources• Vote on most credible resources based on referrals

andusage

What needs were identified in young breast cancer survivors in Arizona?

NEEDS ASSESSMENT

Arizona Young Breast Cancer SurvivorOutreach Coalition (AYBCSOC)

• Purpose: Identify top priorities of YBCS• Composed of young survivors,

medical community, and community partners

• Provide advice and support for the needsassessment

• Select top 5 priorities based on data collected from needs assessment

• Recommendations for implementation of projectplan

• AYBCSOC– presented with a ‘needs’ report including:

• Medical, Daily, Emotional, and Relationship Needs

– Narrowed needs to top 11, based on responses byassessment participants

– Formal, anonymous, online vote identified top 5 priorities

Identifying Top Priorities

• Top Five Needs Identified State Wide1. Understanding the diagnosis2. How and where to obtain financial assistance3. Connecting with other young women with

breast cancer4. Addressing issues pertaining to body

image5. Finding support for family and friends

Needs Assessment Results

• Coconino County– Physical symptoms including lymphedema– Diet and exercise

• Yavapai County– Dealing with stress and anxiety– Dealing with fear of recurrence

• Santa Cruz County– Communicating with children

County Overview

• 100% diagnosed with Stage II <35 years old• 67% discovered by self breast exam

– Took between 4-6 months between detection and diagnosis

• 100% had children prior to diagnosis– All under the age of 10

• Traveled less than 10 miles (one-way) totreatment

Coconino County Overview

• All Spanish-speaking• No family history• Lower education level• 100% had children prior to diagnosis• 75% found it themselves• 100% travel >50 miles (one-way) to

treatment• 50% had private insurance

Santa Cruz County Overview

• 100% diagnosed between 26-35 years of age– All diagnosed at Stage II

• 100% had children <10 years of age• 67% had a family history

– but did NOT receive genetic testing

• 0% were working at the time of diagnosis– 67% were covered by AHCCCS

Yavapai County Overview

• Customize educational programs to address particular needs and demographics of each county and population

• Make resources more accessible and easier to navigate

THEY TOLD US THEIR NEEDS… NOW WE CAN HELP ADDRESS THEM

Our Response to These Needs

How the Initiative will address needs identified by needs assessment

PROGRAM PLAN

Young Breast Cancer Survivor (YBCS)Support Services

• Provide structured support services to YBCS• Create an online resource center• Conduct large scale educational seminars

withexperts in the areas of greatest need– Fertility expert– Child life specialist– Sexuality and relationship counselor

• Increase the proportion of cancer survivors who report physical health-related quality of life similar to the general population

• Reduce the overall cancer death rate

• Reduce the female breast cancer death rate

Healthy People 2020 Focus

Healthy People 2020 Action Plan• Establish a presence in Arizona

– Community Events– High Schools– Universities– Community Organizations

• Encourage breast health awareness

• Promote personal advocacy

• Highlight young women’s diagnosis toremember to have ‘important discussions’

• Full-focus treatment– Instead of ‘instructing’, focus on ‘discussing’– Diagnosis/Treatment effects on fertility– Discussion of long-term effects of diagnosis

• Triple-Negative: high recurrence rate• Estrogen Positive: what does taking Tamoxifen

mean?

Medical Community Action Plan

Addressing the needs of young survivors

THE WEBSITEwww.azbreastcancer.org

Arizona Breast Cancer Resource GuideCommittee (ABC)

• Groups of individuals representing manyorganizations throughout state– American Cancer Society– Arizona Department of Health

Services– Cancer Treatment Centers of

America– Desert Cancer Foundation of AZ– Bosom Buddies of Arizona– Susan G. Komen for the Cure– And many others

• Connects breast cancer survivors with credible resources

• Lessens load for patient navigators• Streamlines process for patients seeking support

services specific to their needs• Website launched August 2012

www.azbreastcancer.org

• Financial Assistance

• Support GroupInformation

• Fertility Information• Questions to ask your

Doctor

• Wigs/Prosthetics• Advocacy

Opportunities

• Coming Soon:How to talk to yourchildren about cancervideowww.azbreastcancer.org

• Clinical Trials

• Partner with us to bring educational events to your area

• Connect YBCS to our initiative to find services

• Share www.azbreastcancer.org

• Data sharing: provide data specific to your YBCS

• Share Initiative collateral so you may help address those who are in need in your area

How can we Collaborate?

Questions?

**This presentation was supported by Cooperative Agreement Number DP11- 1111 from The Centers for Disease Control and Prevention.

Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the

Centers for Disease Control and Prevention.**