1. Support for Patients and Caregivers
Cancer 101 – Version 2
Learning Module 10 1

2. Learning Objectives
At the completion of learning Module 10, you will be able to:
Describe two emotions a cancer patient might experience after diagnosis
Describe two ways to provide support to a patient facing cancer
Describe two ways to make caregiving less stressful

3. Learning Objectives (cont’d)
Give two examples of how cancer survivors can bring back balance to their lives
Describe the role of Survivorship Plans in follow-up care after cancer treatment ends

4. Journey of a Cancer Survivor
Step One: Diagnosis and Treatment
Step Two: Post-treatment
Step Three: Transition from specialty care to follow-up care
Step Four: Long-term survivorship
Dr. Fitzhugh Mullan, founding president of the NCCS and cancer survivor, described the survivorship journey as a three stage process: acute survivorship (diagnosis and primary treatment); extended survivorship (post-treatment); and permanent survivorship (long-term survivorship).
This description held for more than two decades. However, advances in knowledge about cancer survivorship and quality of life spurred interest and action to revisit and update the stages to better reflect the journey of today’s cancer survivor.
In 2008, a fourth stage of the survivorship journey was added that focuses on the transition from specialty care to follow-up care that is likely to be overseen by the primary care provider and take place in the community.
This module will address these stages of the journey.

5. Living Beyond Cancer
More than 10 million people living with, through and beyond their cancer in the U.S. today.
1 in 3 people will be diagnosed in their lifetime.
3 in 4 families will care for a family member with cancer.
Source: National Cancer Institute, Facing Forward: Life After Cancer Treatment

6. Who are cancer “survivors”?
Persons who have been diagnosed with cancer and the people in their lives who are affected by the diagnosis, including family members, friends, and caregivers
A cancer survivor is anyone who has been diagnosed with cancer, from the time of diagnosis through the rest of his or her life.
Family members, friends and caregivers are also part of the survivorship experience.
The word “survivor” help many people think about embracing their lives beyond their illness.
Photo credit: Katherine J. Briant
Source: National Action Plan for Cancer Survivorship

7. Coping with the Cancer Diagnosis
First few weeks are often the most emotional.
Feelings may change day to day, hour to hour, or even minute to minute.
Most people are able to move on and look forward to healing.
Remember - more people are surviving and living long lives after diagnosis!
Feelings of denial, anger, fear, stress and anxiety, depression, sadness, guilt and loneliness are all normal.
So is a feeling of hope. While no one is cheerful all the time, hope is a normal and positive part of a person’s cancer experience.

8. Photo credit: Daniel Sone | Source: NCI
How to be Supportive
In helping someone face a cancer diagnosis:
Be the friend or loved one you’ve always been.
Be there like you always have been.
Don’t be afraid to share feelings.
Offer to help with child care.
Offer to give caregivers a break.
Cancer will not only change a person’s life, but also the lives of those around them.
It impacts families and friends in different ways:
Talking about cancer can be hard for some families
Routines of family life may change
Roles and duties within the family will change
Relationships can be strained and strengthened
Photo credit: Daniel Sone | Source: NCI

9. Getting Help, Receiving Support
No one needs to face cancer alone!
Emotional, spiritual, and practical support can be offered by family members, friends, other cancer patients, traditional healers, health providers, and community members.
Cancer patients who receive support are often better able to cope with their illness.
Those who give support benefit by being able to doing something meaningful.
Those diagnosed with cancer should think about reaching out to get help because they may need help with household chores and errands.
Respite care can give regular caretakers a much needed break.
People who have cancer often find that their needs change because of their cancer.
The tasks of daily life become harder to manage.
Feelings can be intense and spiritual questions loom larger than ever before.
People they can turn to for help include:
Family and friends – most are happy to find out they have something to offer (a meal, a ride to the doctor, a phone call) that is helpful to the patient.
Others with cancer – people who have been through cancer often share a special bond with one another.
Support groups – talk to a health care provider to help find the right type of group
Spiritual help – can come from church, synagogue, or other religious center. Or reading, talking with other, meditating or praying may provided a sense of peace and strength.

10. Making caregiving less stressful
Offer relief from daily responsibilities.
Don’t try to do everything at once.
Know your limits.
Attend support groups.
These are some suggestions.
Counseling and support groups can help a family deal with the issues that cancer raises.
Most families find that being honest and open about the cancer, about the problems that arise, and about their feelings, helps them handle the changes that cancer causes.
This photo has a creative commons attribute license
Photo credit: Rosemary Bliss

11. Photo credit: Andrew Prickett
On the Path to Recovery
Suggestions for bringing a sense of balance back into life:
Get back into a routine
Return to work
Choose activities that have a purpose
Spend time with family and friends
The greatest challenge a person may face in their lifetime is facing a cancer diagnosis and surviving cancer treatment.
Attaining and maintaining balance is an important part of recovery.
Part of the balance is also ensuring you get adequate rest and share stories of survival.
Photo has a creative commons attribute license:
Photo credit: Andrew Prickett

12. Survivorship Care Plans
Recommended for survivors
Should include:
Summary of cancer diagnosis
Summary of cancer treatment
Follow-up plan for health care
In 2005, the Institute of Medicine issued a landmark report, From Cancer Patient to Cancer Survivor: Lost in Transition, which called for the development of a “Survivorship Care Plan” by each cancer survivor.
A Survivorship Care Plan should include a record of the person’s medical history, a summary of their cancer diagnosis and treatment, and a follow-up plan for health care.
Cancer survivors should work with their healthcare team to create a Survivorship Care Plan.
Use of survivorship care plans can provide benefit to AI/AN survivors by serving as a method to help their primary care providers (PCPs) increase their knowledge and understanding of their cancer treatment history and future care needs.
These tools can also aid in helping PCPs feel more connected to the cancer specialty care team in the larger care network thus increasing their level of comfort providing for the care of survivors.
Photo credit: Daniel Sone | Source: NCI

13. Follow-up care All cancer survivors should have follow-up care.
Follow-up care will depend on:
Type of cancer
Type of treatment
Overall health status
Doctor will check for side effects from treatment and whether cancer returns
Follow-up care means seeing a doctor for regular medical check-ups.
A person’s follow-up care will depend on the type of cancer and type of treatment they had, along with overall health status.
In general, survivors usually return to the doctor every 3 to 4 months during the first 2 to 3 years after treatment and once or twice a year after that.
At these visits, the doctor will look for side effects from treatment and check if the cancer has returned or spread to another part of the body.
Resources are available to assist with the development of a Survivorship Care Plan. Templates are available from the American Society of Clinical Oncology, American Cancer Society, National Coalition of Cancer Survivorship, and the Lance Armstrong Foundation.

14. In Summary You now have an understanding of:
The psychological and social issues affecting cancer patients and their caregivers
The role Survivorship Care Plans play in follow-up care after treatment ends