Cancer Survivorship : Life After Treatment Ends

Gilbert Almanza, RN, MSN, AOCNPOncology Nurse Practitioner

Horizon Oncology

I. Definition of Survivorship II. Purpose of Survivorship

Movement III. Factors that Impact Survivorship IV. Treatment Summary and Plan V. Roles in Survivorship Care

“If you’re going through hell, keep going.”

Winston Churchill, British statesman, 1874-1965

National Coalition for Cancer Survivorship: “Survivorship starts at the time of diagnosis, and proceeds along a continuum through and beyond treatment, recurrence, cures, and final stages of life regardless of its cause.”

Extended definition includes“caregivers, family, and friends”

Estimated 12 million cancer survivors in United States in 2012.

Expected to grow to 18 million by 2022 Sixty-five percent diagnosed in last 5 years. Twenty-five percent in 5-10 years Fifteen percent within last 20 years

American Cancer Society, 2012

Long term remission by site:

Breast 41 percent Uterine corpus 8 percent Colorectal 8 percent Melanoma 7 percent Thyroid 6 percent

International Agency for Research on Cancer, 2013

Long term remission by site:

Prostrate 43 percent Colorectal 9 percent Melanoma 7 percent Bladder 7 percent Non-Hodgkin Lymphoma 4 percent

International Agency for Research on Cancer, 2013

Many cancer survivors who are experiencing cures.

Others who may experience long term remissions lasting decades.

Those with multiple episodes of retreatment during remission periods.

Almost half of survivors are over 70 years old.

Five percent are under the age of 40 years.

American Cancer Society, 2012

““Survival rates, while justifiably Survival rates, while justifiably important in themselves, cover only important in themselves, cover only a portion of the total problem. a portion of the total problem. These rates do not relate to how the These rates do not relate to how the patient survives; at what cost to patient survives; at what cost to his/her physical functioning; how his/her physical functioning; how he/she is fulfilling his role in family, he/she is fulfilling his role in family, work, among friends, and in the work, among friends, and in the wider society…” wider society…” Izask and Medalie, 1971 Izask and Medalie, 1971

Confusion over chemotherapy/biological therapies they received.

Confusion over management of side effects from therapy.

Confusion over who to see when experiencing new symptoms.

Difficulty with financial issues regarding treatment and surveillance.

Uncertainty over surveillance schedule. Uncertainty over impact on future

employment. Unclear information on changes in

physical, mental, spiritual, emotional, sexual, and social domains.

1986 Survivorship movement started with formation of National Coalition of Cancer. Survivors.

1996Development of the office of cancer survivorship in the National Cancer Institute.

2005Institute of Medicine Report “Cancer Patient to Cancer Survivor: Lost in Transition” published.

2012Development of CoC Accreditation Standards requiring Careplans, psychosocial assessment, and patient navigators.

Declining number of oncologists as number of survivors continues to climb.

Increased involvement of primary care providers in management of survivors care.

Increased importance of communication and collaboration between oncologists and primary care providers.

Limited research on best way to provide follow-up care for cancer survivors.

Medscape, 2013

Establish awareness of survivor needs. View survivorship as a distinct phase of

cancer care. Provide comprehensive care summary and

follow up plan. Should be reimbursed. Use evidence-based systematic guidelines,

assessment, and screening tools to identify and manage late effects from cancer/treatment.

IOM, 2005

Quality measures should be developed. Support demonstration models. Congress should support CDC development

of cancer control plans. Expand educational opportunities for

healthcare providers to address survivor issues.

Eliminate job discrimination, minimize effects of cancer on employment, and support survivors during short-term or long-term inability to work.

Provide access to adequate and affordable health insurance.

Recognize survivorship as an essential part of cancer care and planned benefits, and payment/reimbursement mechanisms to facilitate coverage of evidence-based care.

Increase and expand support for survivorship care research.

““Survivorship must be viewed less as a period of Survivorship must be viewed less as a period of

acute symptoms and more as a dynamic, life long acute symptoms and more as a dynamic, life long

process. And just as we prepare for treatment and process. And just as we prepare for treatment and

potential side effects we must also prepare for potential side effects we must also prepare for

long term survival…long term survival…

Survival is not a singular aspect of one’s life but Survival is not a singular aspect of one’s life but

rather an accumulation of physical, psychological, rather an accumulation of physical, psychological,

sexual, social and spiritual responses to changes sexual, social and spiritual responses to changes

which have evolved from the cancer diagnosis and which have evolved from the cancer diagnosis and

its treatment” its treatment”

Pelusi, 1981Pelusi, 1981

Prevention of recurrent or new cancers. Prevention of late effects from treatment. Surveillance of recurrent, late effects, or

secondary cancers. Interventions for physical and

psychosocial distress from cancer treatment.

Evaluation of concerns of employability, insurance, and disabilities.

Collaboration and coordination of multiple care providers to meet specific survivor’s needs.

IOM, 2005

Comprehensive survivorship care plan that includes: Follow-up plan for surveillance. Treatment summary Collaboration and communication with

survivor’s primary care provider. Health promotion. Psychosocial support and interventions. Financial support and education.

Guidelines for site specific cancers and stages related to the survivor.

Focus should be on prevention and early detection of recurrent cancer and new cancers.

Additional assessment for late effects from treatment.

IOM, 2005

Detailed information on chemotherapy drugs used or radiation doses. Pathology reports. Surgical reports. Most recent scans. List of potential short-term, long-term,

and late effects from treatment.Potential long term effects from disease.

IOM, 2005

Most often resolving acute side effects from therapy.

Need to ensure not evolving into long-term effect.

Examples would be nausea and/or vomiting.

These effects can be experienced during the treatment phase and may last into the survivorship phase.

May require referral to other specialties for continued intervention and assessment.

Psychosocial Medical Financial

Impact on general quality of life from Depression Anxiety Fatigue Cognitive limitations Sleep problems Pain Sexual dysfunction

Is affected by: Co-morbid conditions Cardiovascular health Neurologic conditions Endocrine disease

Future quality of life is affected by: High out-of-pocket medical expenses Inability to pay for future medical care Bankruptcies Loss of savings Disability Employment problems Insurance denial

Provide preventive care incorporating lifestyle modification: Exercise Smoking cessation Healthy diet Alcohol cessation Stress management Genetic counseling

Multi-directional communication between oncologist, primary care provider, patient, and other care-givers

Input from team members to problem solve and support decision making

We haven’t been meeting all of their needs up till now

Once their cancer treatment is done, we used to say goodbye,

In the meantime, support groups have been organized and have been helping

But, survivorship care has been split among many groups

Now, we need to think of the long-term treatment needs of the patient and put everything together

“It is not enough that we do our best; sometimes we must do what is required.”

Winston Churchill, British statesman 1874-1965

And cancer patients have been telling us for many years, we need to

“Git r done”Larry the Cable Guy, comedian,

1963-