When Cancer Touches Your Family

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When Cancer Touches Your Family

• Patti OBrien M.D.
• Mother
• Survivor

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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

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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
  doesnt seem to want to talk about it
• Archie loves Edith
• Edith loves Archie
• They need to find ways to cope together

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There is no right or wrong way to cope as a family
Cancer coping degree
School of cancer communication
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We all cope in our own way

• 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

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Edith may be worried about

• 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

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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

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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

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Children's reactions

• 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?

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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

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The Stages of dealing with cancer

• 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

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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 doesnt matter what stage you are at, or if
  you have been cured
• Even the word survivor can become loaded

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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

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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

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Getting through treatment

• Be nice to yourself
• Learn to ask for help
• Let people help you
• Dont 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

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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

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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

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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

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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
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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
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Why does a cell loose control?

• Toxic exposure-like smoking
• Over stimulation of hormone triggers-estrogen
• Radiation exposure
• Diet, lifestyle, exercise
• Immune changes

• DNA is usually very highly regulated, with
  multiple on and off switches that try to protect
  us from cancer. We only get cancer if multiple
  things go wrong.

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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

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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?

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Survivor issues

• 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?

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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

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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

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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

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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

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If the old sex is not working try some new
styles of sex

• Lubrication
• silks and soft materials
• new positions
• slower paces
• more foreplay
• more creativity
• gentle hugs are always good

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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

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The lymphangion is the power house of the
lymphatic system

• It is a pump like the heart.

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Lymphedema can develop if there is a blockage in
the drainage pathway.
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Complete Decongestive Therapy Manual Lymph
Drainage
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Mild lymphedema
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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

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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

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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

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Cording can be gently stretched out after
healing
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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

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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

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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

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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

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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!

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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 dont 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

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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

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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

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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 get cancer
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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

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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

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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

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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

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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

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Things you can do

• 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

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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!!!!

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Lessons cancer has taught me

• 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

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Guide to the Weekend of Hope
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Traveling Art show of the Stowe Weekend of Hope
flags
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Stowe is associated with the spirit of hope and
optimism
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Our the hills are alive with the Sounds of
Music moment
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AZ will also be sponsoring a Bus of Hope coming
from Maine
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The only silly question is the one you dont ask

• we can all learn from each other as we each learn
  to be
• SURVIVORS