FACING THE RISK: MY STORY

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FACING THE RISK MY STORY
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Why Im Here Today

• Put an overview of what youre going to talk
• about here.
• Examples
• To tell the story of my mastectomy reconstruction
• To raise awareness about hereditary breast and
  ovarian cancers
• To give you resources you can rely on for
  information and support

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Who am I?

• Now is the time to connect with your audience and
  get comfortable speaking. Starting with a bit
  about yourself is a way to get comfortable with
  speaking (after all talking about yourself is
  always fun ?)
• Tell about yourself (Not the FORCE you) but the
  every day you. Mom of twins, veterinarian,
  grandmother of 3, etc.
• Consider a picture or two of your family, pets,
  etc. (if youre comfortable)

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Why Me?

• This is where you can tell your story. If using
  slides bullet the key items and then speak to
  them. This is a key piece of your presentation.
  If using slides this may be 2-3 slides.
• If not using slides, consider bulleted notes to
  make sure you address the key pieces (below)
• Questions to Answer and Address
• Family History
• How You Found Out About Hereditary Cancers.
• If you tested why?
• Your Counseling
• Your Results
• Your Decisions

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How is hereditary cancer different?

• The community faces unique and important concerns
• The risks for cancers are higher than the general
  population
• Hereditary cancers often occur at a younger age
  than sporadic
• The cancer risk may be passed down through the
  generations
• There is a higher risk for 2nd or 3rd cancer
  diagnoses
• There are options for lowering the risk for
  hereditary cancer or for detecting it early
• The best way to learn more about these unique
  issues and your options is to consult with a
  cancer genetics expert

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Finding Out if You Are at Risk Finding Out if
Your Cancer is Hereditary

• Genetic testing
• Blood test to determine if you carry one of the
  known cancer- predisposing mutations
• Genetic testing can help people make decisions
  about cancer risk management and/or
  treatmentthere are options available
• Genetic testing can help family members better
  understand their risk for ovarian and breast
  cancer
• Because cancer genetics is a rapidly evolving
  area of research it is critical to see an expert
  qualified in cancer genetics prior to having
  genetic testing

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Genetic Counseling BEFORE Testing

• Discussion of hereditary cancer and genetic
  testing benefits and limitations
• Clarification of options using a nondirective
  approach
• Determination of appropriate test and appropriate
  first person in family to have testing
• Assistance in insurance coverage of testing
• Information about risk-management, follow-up
  care, referral to experts, and available
  research protocols
• Information about insurance discrimination laws
  in your state
• INCLUDE YOUR OWN EXPERIENCES WHY GENETIC
  COUNSELING HELPED YOU

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• FORCE Our Mission To improve the lives of
  individuals and families affected by hereditary
  breast and ovarian cancer by

• Providing unbiased information about options for
  evaluating, managing and living with hereditary
  breast and ovarian cancer risk
• Providing support and resources for individuals
  and families concerned about these risks
• Representing the concerns of our constituency to
  the cancer advocacy community, the scientific
  and medical community, the legislative
  community, and the general public
• Raising awareness of hereditary breast and
  ovarian cancer syndrome
• Promoting research specific to hereditary cancer
• Promoting access to information, resources and
  research specific to hereditary cancer in order
  to reduce disparities among underserved groups

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FORCE Online

• Website comprehensive information about
  hereditary cancer, research, risk management
  and advocacy
• ACTIVE Message Boards and Support
• Over 120,000 posted messages
• Over 50,000 visits per month
• Over 20 new visitors per day

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FORCE In Print

• Free publications on hereditary cancer
• Joining FORCEs quarterly newsletter
• Brochure on hereditary cancer, genetic counseling
  and testing
• Brochure on genetic discrimination
• Brochure about FORCE
• Developing brochure about hereditary breast and
  ovarian cancer for Jewish women

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FORCE LIVE

• Helpline
• Toll-free helpline (866)824-RISK
• Joining Forces Conference
• May 18-19, 2007
• http//www.facingourrisk.org/conference
• Patient-focused conference with topics of
  interest to our community
• Topics Include
• Modifiers of risk Cancer early detection
  options New treatment for BRCA cancers Cancer
  prevention options Coping with risk Diet and
  lifestyle Relaxation Managing menopause
  Reconstruction options Fertility and adoptions

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What You Can Do

• Know your family medical history and share you
  medical history with your family
• If you want to know if your cancer is hereditary,
  see a specialist in cancer genetics
• If you want support or information specific to
  hereditary cancer, come to FORCE

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How to Reach FORCE

• www.facingourrisk.org
• info_at_facingourrisk.org
• Toll-free voice mail (866)288-RISK
• Help Line (866)824-RISK

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Additional Slides

• The Cancer Pre-vivor slide is best used if you
  are a pre-vivor telling your story. It outlines
  the creation and meaning of the term.
• The Whats in A Name Slides are a nice overview
  of what FORCE is about.
• With Great Power was created by Sue Friedman
  and present her feelings. If they resonate with
  you you are free to use them. You may change
  the slides to add in specifics that are more
  personal to you.

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Cancer Pre-vivor

• Survivor of a predisposition to cancer
• Gives a name and label to high-risk people
• Sense of belonging to a community
• Validates fears and concerns

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Whats In a Name?

• Riskthe UNdiagnosis
• Living with uncertainty
• Exact risk is unclear
• Friends and family often
• unsympathetic

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Whats In a Name?

• Empowered
• For many women information is empowering
• Women can only make informed decisions if they
  are receiving the most up to date, accurate
  information
• Finding a community of peers who are facing the
  same issues can make women feel less alone

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With Great Power Instructions

• You are free to use these slides as appropriate.
  However, you may want to do the following
• Put up the the slide that says With Great Power
  comes great responsibility
• Engage the audience by asking who said that.
• After a few guesses (or the right guess) give the
  answer (Spiderman) or if doing a PPT flip to
  the slide.

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With great power comes great responsibility
this is my gift, this is my curse.
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With great power comes great responsibility

• The power to look at DNA and determine risk for
  disease
• The power to tailor treatment for the individual
• The responsibility for making sure the
  information will help and empower us
• The responsibility of making sure that the
  information is not used against us

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this is my gift, this is my curse.

• The gift of learning why cancer developed
• The gift of being able to take proactive steps to
  lower the risk for further cancer
• The gift of relief that can come with a true
  negative test

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this is my gift, this is my curse.

• The curse of knowing there is increased risk for
  further cancer and having to make difficult
  choices for managing these risks
• The curse of knowing that none of these choices
  can totally eliminate these risks
• The curse of knowing that the risk can be shared
  by other family members or passed down to
  children

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Does anyone know who said this?
With great power comes great responsibility
this is my gift, this is my curse.
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The Faces of FORCE