LIVING AND COPING WITH CANCER

ELSHAMI M. ELAMIN, MDMedical Oncologist

CENTRAL CARE CANCER CENTER

INTRODUCTION When doctor says the word “cancer”:

People can be overwhelmed Cancer diagnosis often brings:

Disbelief Sadness Anxiety Anger Feelings of fear Confusion Feelings of helplessness

INTRODUCTION

Cancer diagnosis may lead to a change in:

Person's priorities: Relationships Career Lifestyle

COPING WITH CANCER

WHAT CANCER PATIENT NEEDS?

Help to answer common questions about cancer.

Help to feel more in control of his/her health.

WHO ARE THE MAIN PLAYERS TO HELP IN COPING WITH

CANCER?

Patient

Health care

provider

Caregiver

ROLE OF THE PATIENT

“FIGHTING”

FIRST DOCTOR VISIT

When you meet your health care team:

Learn the medical terms Will help making informed decisions

about cancer treatment Ask for a simpler explanation

when don’t understand something Ask to see:

Drawings Pictures X-Rays

Seeking information Understand your disease

Process of diagnosis Treatment optionsREMEMBER:

During the initial visit, absorbing the news of the cancer and its unfamiliar medical language may be

difficult and overwhelming

SOME PATIENTS WANT TO KNOW MORE INFORMATION WHILE OTHERS LESS

When you get home: Try to take care of yourself while

coping with this news Start learning about your disease Seek the support of family, friends,

and others Find other ways to express your

feelings Write down your questions for the

next doctor visits

GET ORGANIZED Because:

In a short period: Various doctors’ visits Gather a large amount of paperwork Test results Personal notes Talking to insurance Creat

e a syste

m

Back again to see your health care team:

Ask your questions again May bring a family/friend

Not only be supportive, but can also help listen to and remember information

Being an informed, involved patient is helpful to you and your health care team in forming a partnership in your care.

Tell them how you prefer to be given information about your diagnosis, treatment, and prognosis.

Don't be afraid to ask questions or to let your doctor know that you don't know what questions to ask.

The following questions may be appropriate to ask your health care

team: What is the exact type and name of the cancer I have? How was it diagnosed? What tests were taken and what did they show? Will I need additional tests? What stage is the cancer and what does that mean? What are my treatment options? What are the possible side effects of this treatment option,

both in the short term and the long term? What clinical trials are open to me? Who will be coordinating my overall treatment and follow-up

care? Who will be part of my health care team, and what does each

member does? If I’m worried about managing the costs related to my

cancer care, who can help me with these concerns? What support services are available to me and my family?

Second opinion

A second opinion is standard practice in medical care

Understanding your emotions

Illness changes our relationship to the world.

Remember: There will be days when you cannot

make yourself feel hopeful. That is normal, especially if you feel

physically sick or tired.

Get support Sharing fears and anxieties with family or

friends, counselors, support groups: Strengthen patients emotionally, and perhaps even

physically. However, some may express their feelings in

other ways: Writing Reading Painting Praying

Anxiety and depression: If you find yourself not interested in normal activities for

more than a few weeks, talk to your doctor.

Fear of recurrence Maintain your schedule of follow-up

visits Many cancer survivors describe feeling

scared and nervous These feelings may ease with time

To reduce a anxiety: Discuss with your doctor:

The actual risk of recurrence The symptoms to report

ROLE OF HEALTH CARE PROVIDER

Health care

provider

FIRST PATIENT VISIT

“Doctor’s most difficult duties”

Breaking Bad News:Confirm medical factsReview relevant clinical dataArrange adequate timePrivacyAllow for QuestionsAllow for silence and tearsEmotionally prepare for the encounteroffer realistic hope

Breaking Bad News Keep in mind:

1. Socio-cultural differences: Family barrier

What and how much information is provided

Participation in medical decision-making

Asian pts prefer: Relatives be present more than Westerners do To discuss their life expectancy less than

Westerners2. Religion and believes

Breaking Bad News Patients' preferences for

communication: Differ based on:

Gender Age Level of education Younger, female, highly educated patients desire to receive: As much detailed information as possible

Emotional support

After the bad newsDoctors first focus

on:1. The physical effects of the

disease 2. Treatment

Treatment options:Help patients make more informed decisions about their health care

Patients also should know the short-term and long-term side effects of their treatment to anticipate how their needs may change in the future.

Treatment Side EffectsAnemiaAppetite LossBleeding ProblemsBowel Obstruction

Clotting ProblemsCognitive ProblemsConstipationDiarrheaDifficulty ChewingDifficulty Swallowing Dry MouthFluid RetentionFatigue Fluid Around the Lungs

Fluid in the Abdomen

Fluid in the Arms or Legs or LymphedemaHair Loss or AlopeciaHand-Foot Syndrome

Headaches

Hormone Deprivation SymptomsMenopausal SymptomsInfection

ConfusionMouth SoresNausea and VomitingNervous System Side EffectsNeutropeniaPain Sexual Dysfunction Shortness of BreathSkin ChangesSkin Reactions to Targeted TherapiesSleeping Problems or Insomnia

Hypersomnia or Somnolence Syndrome or NightmaresSuperior Vena Cava SyndromeTaste ChangesThrombocytopeniaWeight GainWeight Loss

Caring for the Whole

Patient

Caring for the Whole Patient  

The health care team should address the psychosocial effects of the cancer:

Lack of information and support Emotional difficulties

Depression and anxiety Lack of transportation Disruptions to work, school, and family life

Paying for medical bills

Emotional support

Patients with untreated depression or anxiety:

Less likely to take their medication

More likely to withdraw from family and others offering support

Emotional support

Resources and services: Peer support groups (Victory in the Valley)

Individual or group counseling Medication

Lifestyle changes Part of cancer treatment

plan may includes:1.Change in lifestyle and

habits2.Change in physical activity

levels3.Change in diet 4.Quit smoking

Managing life disruptions

Change in work schedules or stop working

The Americans with Disabilities Act and the Family and Medical Leave Act provide legal protection for disruptions in work due to cancer treatment

Trouble performing daily activities Home care

What to expect after completing treatment

What treatment patient received Schedule for follow-up Learn the definitions of medical

terms Keep a complete record of

medical careManage Side Effects

Late Effects  Problems from

surgery Problems from

radiation Bone, joint, and

muscle problems Nerve problems Memory

difficulties Dental problems

Vision problems Heart problems Lung problems Endocrine

system problems Digestive

problems Secondary

Cancers

Late Effects Emotional difficulties

Coping with interpersonal relationships Changes to body image Sexuality Returning to the workplace Obtaining health insurance

Fatigue Anemia Pain Sluggish thyroid gland Lack of physical strength Depression

Making Positive Lifestyle Changes

Improve diet: More fruits and vegetables

Quitting smoking Establishing better sleeping habits Reevaluate lifestyle and make

positive changes: Reduce stress Gain confidence Discover new interests Find greater meaning in life Feel more in control

!!Talking With Someone Who Has Cancer!!  

Sometimes it may be difficult to know: What to say What not to say How to be sensitive How to remain supportive at all times

Sometimes it's best to just listen …… OR

Talk about the usual and familiar topics; not every conversation needs to be about cancer

WAYS TO SHOW YOUR SUPPORT

Be Respectful Respect patient need to be

alone at times.

He or she may need to vent frustrations or anger, which is normal.

Try not to take it personal.

Choose your words carefully

It's impossible to truly know what it's like to be diagnosed with cancer unless you have been diagnosed

Avoid phrases, such as: I know what you’re going through … I know how you must feel …

At the Time of Bad News

Avoid making statements, such as

Everything will be fine … It's okay …

Statements like this may not only prove to be false

May also make the patient withdraw from accepting your support because they cannot express their true concerns

Show support with your body language

Keep eye contact Listen attentively, and avoid

distractions Allow for periods of silence Smile and touch

appropriately

Help the patient stay involved

Keep the balance between being supportive and keeping things the same as before cancer diagnosis.

Some people with cancer cope best by staying involved and continuing old routines as much as possible.

CANCER SURVIVORS

Defining survivorship Two common definitions:

Having no disease after the completion of treatment

The process of living with, through, and beyond cancer

Other definition: Acute survivorship:

The time when a person is diagnosed and/or in treatment

Extended survivorship: The time immediately after treatment is completed

Permanent survivorship: A longer-term period

Survivorship is a unique journey for each person

Survivors appreciate life more and gain a greater acceptance of self

Some survivors become anxious about their health and uncertain of how to cope with life after treatment

Survival statistics

Cancer survivors in USA: 3 million in 1971 12 million today 15% of survivors were diagnosed >20 years ago Most cancer survivors today are age 65 or older 68% of cancer patients today are expected to

live at least five years Survivors’ cancers:

Breast 22% Prostate 20% CRC 9% GYN 8%

Increase in survival rates

Improved screening and early detection:

Mammography Colonoscopy PSA Pap smear

Improvements in treatment: More effective treatment of side effects

Anti-emetics Growth factors Antibiotics

The development of targeted therapies

REHABILITATION  

Rehabilitation Cancer rehabilitation

Obtain the best physical, social, psychological, and work-related functioning during and after cancer treatment.

The goal of rehabilitation: Regain control over many aspects of live

Remain as independent and productive as possible

How cancer rehabilitation help?

Improve the quality of life for patient and family

Patient become more independent and less reliant on caregivers

Helping patient adjust to actual, perceived, and potential losses due to cancer and cancer treatment

Reducing sleep problems Lowering the number of

hospitalizations

Cancer rehabilitation services Patient and family education and

counseling

Pain management techniques and medications

Nutritional counseling

Exercise programs to help to build strength, endurance, and mobility

Smoking cessation education and support programs

Assistance with activities of daily living (ADLs)