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

Cancercopingdegree

School of cancer communication

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

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

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

• 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

• 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• 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 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.

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

• 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

• 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 get cancer

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

• 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

• 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