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)