Transcript When Breast Cancer Touches Your Family

When Cancer Touches
Your Family
Cancer Can Touch any
Family
It can happen to any
family at any time
You are not alone
There are many families
that can feel like:
Cancer is “All in the
Family” Cancer
does not happen to
one person,it
happens to families
There is no right or wrong way
for you and your family to cope!
• Archie might want to be the strong silent
type. He might not to talk to Edith about it
• Edith might need to cry, and be upset that
Archie doesn’t seem to want to talk about it
• Archie loves Edith
• Edith loves Archie
• They need to find ways to cope together
There is no right or wrong way to
cope as a family
Cancer
coping
degree
School of cancer
communication
We all cope in our own way
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Some of need to talk
Some of need to have private space
Some of need to ask lots of questions
Some of need to keep it a secret
Some need to share the experience
Some want to be the strong silent type
Some of need to cry
Edith may be worried about
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Being afraid of death
Loosing her hair
Changes in her body
Changes in sexuality
Cost of care
How will Archie and
the kids cope
• How will she cope
Archie may have other worries
• How can he try to
protect Edith
• What to do when she
cries
• How will they pay the
bills
• What will happen to
their sex life
• Treatment choices
What about the kids ?
• What are they worried
about
• Do they understand
Cancer
• What does the word
cancer mean to them?
• How will they cope
• Can they communicate
their fears
Children's reactions
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What is cancer anyway
Is it something I can catch
How will it affect me
What will mom or dad look like bald
Is mom or dad going to die
Will my friends be afraid to come to my
house, will my parent or sibling embarrass
me by “looking sick”?
Some days it may feel like men
are from Mars and women are
from Venus
• We all deal with
things differently
• Mars and Venus both
need to deal with the
cancer together
The Stages of dealing with cancer
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Getting the diagnosis
Coming to except the diagnosis
Getting information
Making treatment choices
Undergoing the treatment
Learning to be a survivor and move on with
your life
I assume most of you already
have been treated, so I am going
to focus on the survivor issues.
• I define survivor as anyone that has been
diagnosed with cancer, at any stage
• It doesn’t matter what stage you are at, or if
you have been ‘cured’
• Even the word survivor can become “loaded”
Dealing with Information
Overload and Data Processing
• There are many controversies about how to
treat different stages of any type of cancer
• We all make choices in different ways
• Treatment choices are hard to make
• The choices we make will have
consequences on the whole family
• We each need to come to peace with our
choices and move on to treatment
Treatments vary depending on
your stage of cancer and what
type of cancer it is
• The role of Surgery is to remove the tumor,
and to “stage” the disease
• Adjuvant chemo therapy is dependant again
on the stage of your tumor
• Radiation therapy is for local control
Getting through treatment
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Be nice to yourself
Learn to ask for help
Let people help you
Don’t be shy asking for more medications
to control uncomfortable symptoms
• Being in pain or vomiting does not need to
happen-talk to your oncology nurse
• Ask questions, understand what is
happening to you
So now you are done cancer Rx
• How do you learn to
be a survivor
• How do you learn to
get on with your life
• Are you like the old
you or is it a new you
• Do you like the post
cancer treatment you
Common Survivor Issues
• What just happened to me, emotionally,
physically, hormonally, who am I
• My body has changed- can I learn to like
this new body the way I liked the old one
• How does my partner like my new body
• Will our sex life ever be the same
• And for many women hot flashes (power
surges) can be embarrassing
Why did I get Cancer?
• There are many theories
• In Breast cancer 10% are genetic (90% of
breast cancers are in women with no family
history)
• Genetic mutations and changes in cell
regulation AFTER birth
• Lifestyle and environmental causes are part
of what can cause mutations
Cell division is normally tightly regulated by hormones,
chemical triggers, extracellular proteins, and
maturation factors
Each cell should divide into two cells in a regulated way
Cancerous cells are dividing with out any regulation,
they are no longer listening to the hormones, cell
triggers, or messages that are telling them to divide
slowly. They are dividing out of control.
They are growing without regulation
Why does a cell loose control?
• Toxic exposure-like
• DNA is usually very
smoking
highly regulated, with
multiple on and off
• Over stimulation of
switches that try to
hormone triggersprotect us from cancer.
estrogen
We
only
get
cancer
if
• Radiation exposure
multiple things go
• Diet, lifestyle, exercise
wrong.
• Immune changes
Good books when soul searching
about “why you” and cancer?
• Our Stolen Future by with and intro by
former VP Al Gore, it is on endocrine
disruption, and artificial hormones in the
food chain and the environment
• Living Downstream by Sandra Stiengraber,
a bladder cancer survivor and scientist
• Bill Moyers TV series on Kids and
Chemicals, and Industrial Secrets
Canary in a Coal mine, are those
of us with cancer a warning?
• The canary was used
in the coal mines to
indicate with the air
was no longer safe to
breath
• Do increasing rates of
cancer indicate too
many toxic exposures?
Survivor issues
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Emotional health
physical endurance
surgical scars
post radiation changes
finances
Health insurance
Life insurance
• Reconnecting where
we left off
• figuring out who the
“new us” is
• How do I choose to
run my post cancer
life?
Body changes and sexuality
• There is no
relationship between
sexual satisfaction and
the amount of breast
tissue
• There is no increase in
divorce rate after
mastectomy
Relearning to trust your new
body after cancer left it altered
• You want to continue
to examine it and care
for it
• You need to be able to
touch it and find more
than lumps and fear
• Scars change with
time and will your
attitude toward those
scars
You need to like the new you
• Surgery and radiation
therapy have changed
your body
• You need to like it and
be comfortable with it
• If you are not
comfortable with
yourself how can
anyone else be
ACS research shows that you can
do more than survive cancer.
You can THRIVE after cancer
• Good relationships can get stronger
• With creativity sexuality can get more
interesting and BETTER
• We can celebrate life with the people we
love in new ways with deeper meaning
If the “old sex” is not working try
some new styles of sex
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Lubrication
silks and soft materials
new positions
slower paces
more foreplay
more creativity
gentle hugs are always
good
Lymphedema
• A swelling of the arm, or leg, back, chest
wall, or breast tissue
• It can happen anytime
• Most likely to happen after an axillary or
inguinal dissection, or radiation therapy
• Early identification makes it easier to treat
• Symptoms can be hard to interpret
The lymphangion is the power
house of the lymphatic system
• It is a pump like the heart.
Lymphedema can develop if
there is a blockage in the
drainage pathway.
Complete Decongestive Therapy
Manual Lymph Drainage
Mild lymphedema
If the arm or leg is swollen
special wraps can be used to
shrink it
• These are done by a
lymphedema therapist
• This may be a physical
therapist, occupational
therapist, oncology
nurse or massage
therapist
Lymphedema in the legs can be
treated multiple ways
• Lymph pumps can be
used at home
• Massage therapy
(manual lymphatic
drainage)
• protective footwear
• support stockings or
panty hose
Prevention is the key in
Lymphedema
• Avoid trauma to the skin, sunburns, cuts,
anything that can introduce an infection into
the skin
• Get medical attention quickly for any sign
of a skin infection
• Advance exercise slowly, work with a
lymphedema therapist if you have any
questions
“Cording” can be gently
stretched out after healing
Advanced Lymphedema
• Even advanced lymphedema can be treated
• Treatment consists of gentle massage,
bandaging, and compression garments
• Treatment can reduce the size of the arm or
leg, and increase the function
• Infections can be a serious complication of
lymphedema and requires antibiotic
treatment
Chemobrain
• Neurocognitive changes is the formal
clinical term
• It is assumed to be due to chemical injury to
the brain
• Changes in short term memory, math
calculations, and self-planning are most
affected
• Testing and treatment is available
Chemobrain coping tips
• Forget what you need
at the store
• You find yourself lost
and disoriented
• You find your milk in
the oven
• Your kids remind you
that you forgot to pick
them up
• Make lists of tasks and
needs
• REST and REST some
more
• Laugh and throw out
the milk
• Be open and talk about
your limits, ask them
to pull their share
“change in life”
• You may have entered MENOPAUSE (the
other change, as if cancer was not enough)
• Enjoy those Power Surges
• Medication can help with hot flashes-SSRI
• Prosac in low does can help
• There are predictable body changes with
menopause
Body changes with menopause
• Vaginal dryness
• Decreased estrogen
• Power Surges
• Decreased sexual
drive
• No more menses
• Use a lubricant
(surgilube, astroglide)
• hair, skin, breast
• Soy may help
• Take time to get things
started
• Celebrate it!
Post radiation sensory changes
• Hypersensitive- it hurts to even be touched,
you want to pull back when hugged, even
your shirt or bra hurts
• Hyposensative- you don’t feel anything, it is
very numb, you could injure it and would
not know it
• Both get better with time, gentle rubbing
helps the the nerves normalize
• There are treatments if it persists
Reconstruction- a very personal
choice only you can make
• Multiple options, some are bigger
operations than others
• Not an option for everyone
• Emotionally not the right thing for everyone
• Sensation may change
• Chances of lymphedema may be increased
Clinical Research
• Provides you with the
best possible care
• You have access to
medications that you
might not otherwise be
able to get
• You are never
deprived of care- that
would be unethical
You are not a
guinea pig on
a clinical trial.
Only you can
help find the
answers for
the next
generation
that will be
challenged by
cancer
People we
love will also
Monitoring and Screening after
being diagnosed with cancer
• Talk with your oncologist and surgeon
about your specific needs
• Different cancers need to be monitored in
different ways
• Routine health care screening needs to be
worked into your post cancer care
• Open up and communicate about the
anxiety of testing
Recurrent or Metastatic disease
• When the going gets tough, the tough get
going
• The greater the “tumor load” the more
treatment it will take to get it under control
• Chemo therapy, hormone therapy, and
radiation therapy are all useful tools
• Look at clinical trials and experimental
drugs-NCI hotline will give info
What can I do to help boost my
immune system?
• Good nutrition- 5 servings of fruits and
Veggies per day or MORE
• Regular exercise and weight control
• Rest when you are tired
• Emotional health - support groups, friends
sharing, caring, expressing emotions
• Laugh
Alternative treatments, how can I
integrate them into my care?
• The terms alternative, complimentary, or
holistic care means different things to
different people
• Talk to your primary care physician and
oncologist about what you are doing
• There is a great deal of controversy about
what will actually help you fight your
cancer. Ask questions, research the issue
Cancer Advocacy- how do we
make things better
• Clinical trial bill was passed in Vermont,
giving access to research trials
• Only 3% of adults participate in trials, that
is going to slow down finding cures
• Insurance companies sometimes
discriminate against cancer survivors
• Genetic discrimination-a whole new issue
• Cleaning up toxic exposure and food safety
Things you can do
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Join a cancer support group
Support your favorite national group
Support local advocacy
Talk to your friends about screening, you
can save a life
• Reach out to others who are newly
diagnosed and give them encouragement
and support
Whatever your family is like- you
and your family can do this
• Take one day at a time
• Ask for help when you
need it
• Breast Cancer presents
many challenges
• Deal with them one
step at a time
• Talk to each other!!!!
Lessons cancer has taught me
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When I get tired I need to sit down
When I get discouraged I need help
I need to learn to live each day at a time
I need to learn to live with the unknown
I need to tell my family I love them often
The present is a gift, to be enjoyed
Guide to the Weekend of Hope
Traveling Art show of the Stowe
Weekend of Hope flags
Stowe is associated with the
spirit of hope and optimism
Our “the hills are alive with the
Sounds of Music” moment
AZ will also be sponsoring a Bus
of Hope coming from Maine
The only silly question is the one
you don’t ask
we can all learn from each other as
we each learn to be
SURVIVORS