Title: FACING THE RISK: MY STORY
1FACING THE RISK MY STORY
2(No Transcript)
3Why 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
4Who 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)
5Why 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
6How 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
7Finding 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
8Genetic 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
9- 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
10FORCE 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
11FORCE 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
12FORCE 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
13What 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
14How to Reach FORCE
- www.facingourrisk.org
- info_at_facingourrisk.org
- Toll-free voice mail (866)288-RISK
- Help Line (866)824-RISK
15Additional 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.
16Cancer 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
17Whats In a Name?
- Riskthe UNdiagnosis
- Living with uncertainty
- Exact risk is unclear
- Friends and family often
- unsympathetic
18Whats 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
19With 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.
20With great power comes great responsibility
this is my gift, this is my curse.
21With 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
22this 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
23this 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
24Does anyone know who said this?
With great power comes great responsibility
this is my gift, this is my curse.
25(No Transcript)
26The Faces of FORCE