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WORKING WITH CANCER SURVIVORS

by Patricia Findley, Dr.PH, MSW, Michael Feuerstein, Ph.D., MPH, ABPP.


3 Credit Hours - $69
Last revised: 12/03/2010

Course content © Copyright 2009 - 2017 by Patricia Findley, Dr.PH, MSW, Michael Feuerstein, Ph.D., MPH, ABPP. All rights reserved.



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  COURSE OUTLINE

 

Overview

Learning Objectives

Introduction

What is Cancer?

Cancer as a Chronic Illness

Understanding Cancer

Cancer Survivorship: What Is It?

Quality Care

Models of Care for Individuals with Chronic Conditions

Chronic Care Model

Expanded Chronic Care Model

Biopsychosocial Model of Cancer Survivorship

What is a Patient Navigator?

Survivorship Care Plan

What is a Cancer Survivorship Care Plan Important?

Living Beyond the “New Normal”

Emotional Well-Being

Stress Reactions and Behavioral Health Needs

Lifestyle

Work

Other Lifestyle Issues

A Structured Approach: 7 Steps to Creating Your Future

1.) Making the Healthcare System Work for You

2.) Becoming a Savvy Survivor

3.) Communicate More Effectively

4.) Form a Strong Support Team

5.) Find the Courage to Change

6.) See Life through More Optimistic Eyes

7.) Create your Future.

Conclusions

Resources

 

OVERVIEW

 

Cancer survivorship is a worldwide trend with over 10 million cancer survivors in the United States alone.  One out of every six people over the age of 65 years old is a cancer survivor.  After decades of focus on treating cancer, researchers and clinicians are now addressing the challenge of helping cancer survivors achieve a decent quality of life.  This course will outline how a therapist can use a 7-step program to help adult survivors achieve that goal.

 

 

Learning Objectives

 

 

This is a beginning to intermediate level course. It is intended to provide an overview of cancer as a chronic illness.  After taking this course, the health care professional will be able to:

 

Discuss current issues of cancer survivorship

Explain the role of a patient navigator

Discuss the concept of “new normal”     

Discuss return to work issues

Explain a comprehensive 7-step model for coping with issues of survivorship

 

 

Introduction

 

Earlier detection and more effective treatment approaches mean that the diagnosis of cancer is no longer an automatic death toll. However, as more individuals are living beyond initial treatment, many experience ongoing health and psychosocial challenges. A survey of 1,000 cancer survivors (majority diagnosed 2 or more years ago) reported that their lives continue to be impacted by cancer, many of these individuals indicated problems with depression, chronic pain, unmet “non medical” cancer needs, and emotional challenges. Seventy percent of respondents in this survey felt their physicians were not to able assist with these non medical issues; this points to the critical need for healthcare provider education in this area. Furthermore, a 2006 report by a committee established by the IOM (Institute of Medicine), published an influential book (From Cancer Patient to Cancer Survivor: Lost in Transition) that acknowledged cancer survivorship as a separate phase of cancer care that has not been given attention, particularly in the areas of advocacy, education, clinical practice, and research (Hewitt, Greenfield, & Stovall, 2006).

 

Research and practice in the fields of public health and behavioral medicine can greatly improve our efforts to maximize the health and quality of life of cancer survivors. The aim of this course is to train healthcare providers to better manage the “unmet non-medical cancer needs” of survivors.  The program is designed to provide participants an overview of an evidence-based approach to assist cancer survivors, maximize the quality of healthcare they receive, and improve many aspects that define the quality of their lives.  Each component of the program is evidence-based and designed to address specific problems experienced during cancer survivorship. The overall goal is to improve the survivors’ self-efficacy through the development of knowledge and skills that can be used to address the challenges that accompany cancer survivorship with you, the clinician, as an advocate and partner in care.

 

The need to move forward to create an environment of quality care, negotiate an often-fragmented healthcare system, and effectively deal with the emotional and interpersonal challenges of cancer survivorship is well documented through qualitative and quantitative studies of cancer survivors.  This course will lead learners through a program that includes approaches to help survivors:

 

1) maximize the quality of health care they receive

2) develop skills necessary to effectively use the health care system

3) develop skills to communicate and collaborate effectively with providers

4) promote exercise and healthy diet

5) cope with challenges at work

6) effectively manage emotional changes

7) calibrate support networks

8) modify their program and evaluate target goals to maximize results

 

Both the clinical approaches and research supporting program components will be highlighted.

 

What is Cancer?

 

Cancer is a complex group of cancerous diseases that can affect nearly every organ of the body. It is distinguished from other diseases by the uncontrolled growth and spread of abnormal cells. Cancer may be caused by environmental factors such as smoking cigarettes, exposure to chemicals and radiation, as well as infectious organisms and by factors within one’s own body such as mutations passed down between generations, hormones, immune conditions, and changes that occur from metabolism. The graph (Figure 1) below illustrates age-adjusted cancer incidence rates.

 

cancerfigure1_653

 

Used with permission:  National Institutes of Health (US). (2007). Biological sciences curriculum study: Understanding cancer.

 

As part of this course, please review Understanding Cancer, part of the NIH Curriculum Supplement Series. Currently, cancer can be treated through methods that include surgery, radiation, chemotherapy, hormone therapy, and biological therapy. In 2010, it is expected that nearly 1,529,560 new cancer cases will be diagnosed in 2010 (American Cancer Society, 2010). Whereas cancer is the second largest cause of death after heart disease (American Cancer Society, 2010), individuals are living with and surviving cancer.

 

Cancer as a Chronic Illness

 

As of 2007, nearly 11.9 million people are surviving cancer in the United States (all ages and all cancer types) (Altekruse et al., 2009). This is up from about 3 million in 1971(National Cancer Institute, 2007).  Screening for cancer has become more routine than in years past, thus early detection and treatment, as well as more successful treatment have contributed to individuals surviving with cancer.  The following graph below (Figure 2) shows the five-year relative cancer survival rate or the proportion of individuals surviving cancer five years after diagnosis. This rate is a ratio of the proportion of observed survivors in a cohort of cancer patients to the proportion of expected survivors. This report shows survival rates for cancers of the prostate, female breast, colon/rectum, and lung combined. It also shows survival rates relative to the goal set forth by Healthy People 2010 (Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services). (Healthy People 2010 is a set of health objectives for the US to strive to achieve by 2010 of leading health indicators of a “healthy population.”  Cancer survivorship is a key health indicator with a goal of a 70% survival rate by 2010.)

 

cancerfigure2lsu_589

 

Used with permission:  National Institutes of Health (US). (2007). Biological sciences curriculum study: Understanding cancer.

 

Cancer Survivorship: What is it?

 

More and more individuals are surviving cancer, and for the US, the numbers of survivors is expected to double by the year 2050 (Edwards et al., 2009). There are several ways to define cancer survivorship. The National Coalition for Cancer Survivorship (NCCS) has created a definition of cancer survivor as being from the time of diagnosis and for the balance of life. More recently, NCCS has broadened the definition of cancer survivor to include family, friends and caregivers who are affected by the diagnosis in any way (National Coalition for Cancer Survivorship, 2010). The NCCS definition also includes individuals who are dying from untreatable cancer.  Some researchers define a cancer survivor as those who have lived at least five years after the initial diagnosis. For the purpose of this course, we will define a cancer survivor to be an individual who has completed cancer treatment. We are focused on the individual diagnosed with cancer, but as the NCCS does, we too recognize the broad reach that cancer has on family, friends and caregivers, so we include information to help and support them as well. We are not focusing on those dying with untreatable cancers.  Rather, ours is a rehabilitative focus directed at cancer survivorship to help the individual and their loved ones to regain footholds in various aspects of their lives.  Cancer survivorship is not just successful medical treatment.  It includes the phase that follows the treatment period that brings with it many physical, psychological, and emotional factors that need to be considered and managed by a multi-disciplinary team of professionals and by the survivor who takes an active role.

 

The Institute of Medicine (IOM) has set forth ten recommendations for survivorship care (Hewitt et al., 2006). These can be seen in Table 1:

 

 

Table 1: Recommendations for Survivorship Care

 

 

Raise awareness of cancer survivorship

Provide a care plan for survivors

Develop clinical practice guidelines for cancer survivors

Define quality health care for cancer survivors

Overcome health care system challenges

Address survivorship as a public health concern

Provide survivorship education and training of health care professionals

Address employment concerns of cancer survivors of all ages

Improve access to adequate and affordable health insurance

Invest in research

Quality Care

 

 

The quality of health care came into question in the 1980’s and 1990’s. Despite efforts to improve the quality, it is clear that our “healthcare system” is not a system at all. Rather, it is a fragmented hodge-podge of programs and services tethered together in varied ways that providers and patients have a tough time understanding and negotiating. In fact, this ineffective system has even left cancer survivors less likely than the general population to receive non-cancer related care such as care for diabetes, heart disease, and other general preventive care (Fontana, Baumann, Helberg, & Love, 1997).  Let’s look at some of the areas that have been pointed out as more problematic in our healthcare system (Table 2):

 

 

Table 2: Problems with Quality in Healthcare

 

 

Patient overload. On the average, a physician spends approximately 7 minutes with each patient. This is not nearly enough time to address many of the complex problems of the cancer survivor’s experience. 

 

Conflicts among providers and insurance carriers. Thirty percent of physicians have reported that they do not suggest potentially effective and beneficial health care services if a patient’s insurance does not cover it.

 

Lack of follow up care. Many patients do not get the most effective and up-to-date treatment. Most notably, studies have shown that patients in the U.S. receive only half the care recommended by medical evidence, with this being especially true for preventative care (e.g., mammograms, influenza vaccinations).

 

Slow pace of progress. According to the Institute of Medicine, it can take 17 years for evidence from a peer-reviewed journal article to be adopted by clinical health care practice.

 

Medical errors. The Institute of Medicine has concluded that medical errors cause more deaths each year than breast cancer, car accidents, and AIDS combined! According to the IOM, many of these errors could be prevented with proper staffing.

 

Little quality control. Since each physician brings with him or her a different set of motivations, skills, and knowledge, this means that some physicians are excellent and recommend routine health checks and physicals, forcing you to stay on top of these important preventative health needs while others may fall short of excellence in care delivery.

 

 

Problems associated with the health care system also include medical errors as can be seen in Table 3:

 

 

Table 3: Watch Out for These Medical Errors

 

 

Error: Failure to follow up on tests or monitoring programs

 

Prevent it by: Making sure you follow up by calling your primary care doctor or specialist’s office. You need those results to find out what, if anything, needs to be done next.  

 

Error: Prescribing the wrong type or amount of medication

 

Prevent it by:  Researching on the internet to make certain the medication and dose is right for you. You can also talk with the nurse or call your local pharmacy. Pharmacists are willing to discuss your medication with you. Also monitor for any side effects that may indicate the dosage needs to be adjusted.

 

Error: Failure to suggest known ways to prevent common problems cancer survivors encounter

 

Prevent it by: Stay on top of research completed on cancer survivors and talk to other cancer survivors about their treatment

 

Error: Failure to suggest a test that may have helped

 

Prevent it by: Check to see what tests are recommended by evidence based guidelines for your specific situation. During every visit, ask your doctor, “is there anything more that can help this particular situation?” 

 

Error: Suggesting the wrong type of care

 

Prevent it by: Consult clinical practice guidelines for the problem and compare them to your treatment.

 

Error: Failure in keeping you informed of your situation   

 

Prevent it by: Ask your doctor about his or her recommendations, explaining that you want to know the evidence behind his or her advice. Also talk with a nurse in the office, and, if that doesn’t work, get a new doctor. 

 

 

Used with permission: Feuerstein, M., & Findley, P. (2006). The cancer survivor's guide: The essential handbook to life after cancer. New York, New York: Marlowe & Company, An imprint of Avalon Publishing Group, Inc.

 

 

Models of Care for Individuals with Chronic Conditions

 

Medicine is known for having an acute care focus, but advances in technology and treatment are necessitating a shift in focus to a chronic care focus that incorporates the management of emerging medical issues as well as the ongoing management of pre-existing and longer term conditions. This multi-tasking management of an individual’s health care involves providers of varying specialties using evidence-based medicine within a health care system that includes the involvement of community resources. The center of the model is an actively involved patient who is educated about his or her condition and is taught to manage acute and chronic care needs. Let us examine some salient chronic care models that are useful in helping the ongoing care planning for the cancer survivor.

 

Chronic Care Model

 

Efforts to improve the quality of health care lead to the development of new ways for health care delivery as well as new ideas about where health care could be delivered.  A notable framework is depicted in Figure 3 below.  The Chronic Care Model (CCM) was developed by Edward Wagner (Robert Wood Johnson Foundation) and includes six major areas of focus:

 

(1) the health system and organization of care;

(2) self-management support for patients to participate in managing their own care;

(3) a delivery system design that supports proactive decision making for addressing health care needs;

(4) decision support for the health care providers that is based on evidence-based practice;

(5) clinical information systems that allow access to patient population data; and

(6) linkages to community resources to facilitate care beyond the scope of the clinical environment (i.e. housing, social services).

 

chroniccaremodelfigure_670

 

Used with permission: Wagner, E. H. (1998). Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice, 1(1), 2-4.

 

Expanded Chronic Care Model

 

With the CCM adoption by many health care systems, and the advances in the field of chronic illness, the CCM was updated by experts in 2003 (Robert Wood Johnson Foundation). The model added five additional areas into the CCM: Patient safety (in the Health System); Cultural competency (in Delivery System Design); Care coordination (in the Health and Clinical Information Systems); Community policies (in Community Resources and Policies); and Case management (in Delivery System Design). These additions make the model more patient-centered, timely and efficient, evidence-based and safe, and coordinated. The model continues to assert that ongoing chronic care needs require planned, evidenced-based routine care for the individual, and interaction between the health care providers, caregivers, and the patient emphasizing the patient’s functional abilities and prevention of further deterioration of function.

 

Biopsychosocial Model of Cancer Survivorship

 

The biopsychosocial model considers much of the CCM, but it is broader in how it considers the individual’s coping response, health behaviors, disposition, and coping skills, as well as the socio-cultural factors that play into the care needs.

 

biopsychosocialmodelfigure_670

 

Reproduced with permission of Springer Publishing.

 

The model includes definitions of the various levels of medical care ranging from acute hospitalization, subacute rehabilitation, and ongoing chronic care. The model is most significantly different from the CCM in that it includes the end stage care. It is through the use of the biopsychosocial model that we consider the role of the patient navigator.

 

What is a Patient Navigator?

 

A survivor juggles trying to assimilate what he or she has experienced, researching symptoms, trying to keep track of medical appointments, communicating with health care providers, and dealing with insurance and billing issues. This process is both tiring and daunting for an already “fatigued-from-the-treatment” survivor. To keep on top of everything, a patient navigator is frequently used. A patient navigator can be a spouse, an adult child, a close friend, or other family member. Basically, this person is an advocate for the survivor, a trusted individual who can help to facilitate communication, accompany the survivor to appointments to be “another set of eyes and ears”, or to just be supportive. It is also helpful to know that when someone does have an advocate.  Generally, they receive better care and more quickly, since clinicians do not consistently address the concerns that patients are presenting (Marvel, Epstein, Flowers, & Beckman, 1999); and, do not evaluate patients' beliefs and understanding of their illness or communicate care management options with patients (Campion, Foulkes, Neighbour, & Tate, 2002). Unfortunately, this is a two-way street.  Often, patients forget some of the most basic pieces of their own care plan (Kravitz et al., 1993). This is why a patient advocate is important. You may work with the survivor to identify an appropriate candidate. This is important since you will be able to assess caregiver burden, willingness, and ability more objectively than the survivor.

 

Survivorship Care Plan

 

Why is a cancer survivorship care plan important? We think by now that you realize that every cancer survivor is different and his or her plan for survivorship can vary. Just as there are many types of cancer with a variety of potential treatment options, there are different sets of risks, side effects, and potential levels of effectiveness. So, it is important that a specific plan is developed to help manage treatment side effects, other disease symptoms, and to set the course for ongoing care. To achieve this goal, it helps to put a lot of important information in one document for both the survivor as well as the providers.  This helps to manage the overall care in the best way possible following active treatment.

 

This document (survivorship care plan) might include key contact information, a summary of the treatment, recommendations for follow-up care, a list of support services and resources, and other salient information.  An example of a survivorship care plan is as follows:

 

 

Survivorship Care Plan for Breast Cancer

 

 

General Information

Date:

Patient Name:

Patient ID:

Phone:

Date of Birth:

Age at Diagnosis:

Support Contact:

 

 

Care Team

 

Medical oncologist:

General/breast surgeon:

Radiation therapist:

Plastic surgeon:

Primary care physician:

OB-GYN:

Nurse/nurse practitioner:

Mental health/social worker:

Other:

 

 

Background Information

 

Family history:

Genetic testing:

Major comorbid conditions:

Echocardiogram of MUGA result:

Additional Comments:

 

 

Left Breast

 

Definitive breast surgery:

Lymph nodes:

Tumor type and stage:

Pathologic stage:

ER status:

PR status:

HER2 status:

 

 

Right Breast

 

Definitive breast surgery:

Lymph nodes:

Tumor type and stage:

Pathologic stage:

ER status:

PR status:

HER2 status:

 

 

 

Treatment Plan and Summary:

 

Patient’s height:

 

 

 

Pre-Treatment

Post-Treatment

Patient’s weight

 

 

Patient’s BSA

 

 

Patient’s BMI

 

 

Date last menstrual period

 

 

Comments

 

 

 

 

 

 

Regimen

 

 

TAC

 

 

Chemotherapy Agents

 

 

# cycles

 

% dose radiation

Name of Agent

 

 

Name of Agent

 

 

Name of Agent

 

 

 

 

 

Anthracycline administered

 

Treatment on clinical trial

Yes

No

Chemotherapy treatment period

 

Possible side effects of regimen

 

Reconstruction planned

Yes

No

Radiation therapy planned

Yes

No

Radiation

Completed:

Dose:

Growth factor given

Yes

No

Grade 3 or higher toxicities

 

 

Hospitalization for toxicities

Yes

No

Neurotoxicity

Yes

No

Early termination of treatment

Yes

No

Biologic therapy

Yes

No

 

 

 

 

Follow-up Care

 

 

Test

 

 

Frequency

 

Provider to Contact

Medical history/exam; Years 1-3

Every 3 months

 

Medical history/exam; Years 4,5

Every 6 months

 

Post-treatment mammography

Every year

 

MRI

Every 3 years

 

Bone densitometry

Every 3 years

 

Pelvic examination

Every year

 

Genetic counseling referral

Recommended

 

Breast self-examination

Every month

 

 

 

Preventative Care Recommendations

 

 

Bone health, Cholesterol monitoring and management, Diet, Exercise, Mental Health, Weight Management

 

 

Symptoms to Watch For:

 

 

List symptoms specific to type of cancer

 

 

Potential Late Effects of Cancer Treatment

 

 

List effects specific to type of cancer

 

Resources for Ongoing Care Needs

 

 

Weblinks such as cancer.gov, cancercare.org, and cancer.net

 

Used with permission: National Coalition for Cancer Survivorship, UCLA Cancer Survivorship Center, WellPoint, I. & Genentech. (2010). Journeyforward.org.

 

 

The creation of the survivorship care plan should be tailored to meet the individual needs of the survivor. The plan is created near the end of acute treatment and follows the individual forward as he or she transitions from the oncologist back to a primary care physician. Currently, there are no empirical guidelines on which to base recommendations and develop survivorship care plans (Jacobs et al., 2009).  Ideally, the care plan should incorporate the American Society of Cancer Oncology (ASCO) guidelines for care recommendations, as well as other materials.  It is important to follow these recommendations and changes that might occur in the guidelines. The care plan should note the emergence of any persistent symptoms specific to the type of cancer such as new lumps, abdominal pain, or chest pain. There are also potential late effects of the cancer treatment that need to be noted since the patient may experience some of these effects. These effects include numbness or pain following surgery, fatigue, weight gain, cognitive dysfunction, sexual dysfunction, psychological stress following chemotherapy, atrophy, fibrosis, breast pain following radiation treatment, hot flashes, increased risk of blood clots, or osteoporosis following hormone therapies. Finally, if the survivor has additional questions, the care plan should include a listing of key resources that he or she might access. Patients are much savvier these days about locating information, particularly on the Internet. The care plan should provide URLs, as well as phone numbers, along with a description of the organization and how it may help. These resources are as varied as the individuals with whom you work, so the resources will vary such as CancerCare (cancercare.org), Cancer.Net (cancer.net), and Facing Forward: Life After Cancer Treatment (cancer.gov).  Other resources might include Employee Assistance Programs that are available through the survivor’s employer to address short-term and long-term disability issues or other personal emotional issues; resources for return to work assistance; financial planning; and, whatever the individual needs. (Several cancer-specific resources are listed below in the “Resources” section of this course). Again, the plan needs to be tailored for the individual survivor needs. Information is important, but don’t overwhelm the survivor with too much or provide information that is not pertinent to his or her situation.

 

Living Beyond the “New Normal”

 

We have covered the various chronic care models to provide a perspective on how the healthcare system can operate to help you as a provider, as well as the cancer survivor, with the creation of a cancer survivorship care plan. An important phrase that you should be aware of in how you interact with a cancer survivor is “New Normal”.  The new normal is the lifestyle that a cancer survivor adopts after the treatment team is no longer intensely needed.  At this point, the survivor is looking forward to building a lifestyle that includes new routines of health care management and living with any deficits or impairments caused by the cancer and/or its treatment. This adaptation is not unlike stages that we experience as we grow older or make significant shifts in our lives due to things like marriage, having a child, or losing a spouse. The cancer survivor modifies parts of his or her lifestyle and relationships based on responses to these various experiences. This transition is not linear.  Adapting to facing the world after cancer treatment varies on an individual basis, day-by-day. Some survivors say they are better able to appreciate the small things in life, are less concerned with trivial matters, are more focused on their priorities, have become more spiritual, practice a healthier lifestyle, feel more in love with their spouse, and are better socially adjusted than before their diagnosis. Not unlike most clients with whom we work, we have to start with what the client brings us, and assume nothing.  You should allow the survivor to educate you on their experiences and reactions. You will be helping to guide the individual to live beyond the new normal during which time that “new” normal will settle into being a more consistent “normal”. During this process, you must stay aware of key areas that will guide your interactions and interventions.  You should always be “checking in” with your client to ensure that you are staying on track with him or her.

 

Emotional Well-Being

 

Stress reactions and behavioral health needs. The psychological stress of the cancer patient was not always considered since so much of the focus was on the medical treatment. It has become recognized that, if the stress is not identified, it can’t be treated and this leads to a feeling of poor quality of care (Ransom, Jacobsen, & Booth-Jones, 2006). There are several validated instruments that can be used to assess distress, including the Hospital Anxiety and Depression Scale (HADS; Zigmond and Snaith, 1983), the 18-item version of the Brief Symptom Inventory (BSI-18; Derogatis, 2000), and the Center for Epidemiological Studies- Depression Scale (CES-D; Radloff, 1977).  The Distress Thermometer (DT) is a one-item screening measure of psychological distress in cancer patients. The recently developed distress thermometer (DT; National Comprehensive Cancer Network, 2003; Roth et al., 1998) addresses the need for a quick, easily understood measure of distress in medical populations.

 

Lifestyle

 

Work. Earlier we suggested that you include resources for return to work in the survivorship care plan. You might be surprised to think about return to work after cancer treatment, but more and more individuals return to work after a cancer diagnosis. First of all, it is clearly documented that working can contribute to a sense of well-being. It has been shown that 74% of cancer survivors less than age 50 return to work, and that 30% of those older than 50 return to work (Wolff et al., 2005).  However, while we are seeing more survivors return to work, functional problems may become more apparent. For example, a recent population-based study in the US (Yabroff et al., 2004) looked at multiple measures of work related burden including a summary measure of health, days lost from work, and health utility. Health utility is a summary measure of overall preference or state of health that is desired across multiple domains of health-related quality of life. For example, the health of an individual with chronic obstructive pulmonary disease (COPD), which primarily affects the lungs (i.e. physical functioning), can be compared with the health of an individual with depression that impacts emotional but not physical functioning. These researchers found that cancer survivors, as compared to healthy controls matched on age, had poorer outcomes on all burden measures, regardless of tumor site. Cancer survivors had lower utility values and higher levels of lost productivity, and were more likely to report their health as fair or poor than the matched control subjects. These findings are not unique.  We mention them to point out that there are areas that need to be considered when assisting with return to work.  As noted by Spelten et al. (2003), survivors do return to work, but need assistance with symptom management to effectively support staying on the job. This is where the practitioner can provide valuable support and assistance. Using what you learned previously about stress reactions and behavioral health needs, you can assist the survivor with return to work as well as connecting him or her to resources in the community (e.g. vocational rehabilitation, transportation assistance, or support groups).

 

Other Lifestyle Issues

 

Other considerations that are critical in the cancer survivorship plan include weight (BMI), overall attention to ongoing health, and preventive health care. However, a significant component includes the support of friends and family. This was discussed in the section previously on the role of the “patient navigator.” The patient navigator assists in the role of the emotional regulator by being a “sounding board”, but the navigator also may also need to seek additional support for him or herself.

  

A Structured Approach

 

7 Steps to Creating Your Future

 

Now that you have the background on some of the general overview of some of the key issues for cancer survivors, there are 7 steps that we recommend that will help you work more successfully with a survivor.  The steps are designed around the idea that survivorship is a journey and with each step on the path the journey will become more clear and the survivor will feel more positive. The 7 steps are as follows:

 

1.) Making the Healthcare System Work for You

2.) Becoming a Savvy Survivor

3.) Communicate More Effectively

4.) Form a Strong Support Team

5.) Find the Courage to Change

6.) See Life through More Optimistic Eyes

7.) Create your Future

 

They are depicted in the diagram below. Note that the arrows go both ways in the boxes to allow for the opportunity to take a step back, if necessary, to gain additional knowledge in the previous step, and then to move forward to the next step. Each step leads into the final step.  Even in the end, the option remains to bolster knowledge, resources, and support from any of the areas at any time.

 

cancer7steps_490

 

Used with permission: Feuerstein, M., & Findley, P. (2006). The cancer survivor's guide: The essential handbook to life after cancer. New York, New York: Marlowe & Company, An imprint of Avalon Publishing Group, Inc.

 

Let’s discuss each of the steps and what you as a clinician can do to help the survivor in his or her journey.

 

1.) Making the Healthcare System Work for You

 

This step focuses on the laws and policies about our healthcare system. It also means keeping current on issues regarding the patchwork that creates it all. It does not mean you have to know it in great detail, but be aware of what constitutes quality care for a cancer survivor.  The American Society of Clinical Oncology is a great resource as it holds the practice guidelines for cancer care. This step also means helping the survivor assess whether or not he or she has a good partnership with his or her health care providers. Opting for new providers may not be easy for a variety of reasons; however, staying with a provider with whom the survivor has communication difficulties or a lack of confidence may be far worse than the search for someone new.  This piece also allows you as a clinician to model good collaboration skills if you demonstrate how you contact other resources for information that the survivor needs.

 

2.) Becoming a Savvy Survivor

 

This step focuses on making the survivor a good consumer of health care. The Internet provides a lot of information, but the quality and source of the information is important to assess. This is also a time for the survivor to become familiar with the scientific literature. The health care providers will be speaking with him or her using terms and descriptions of treatments that are undoubtedly new to the survivor. The general public does not have ready access to scientific literature in the way we might, and they certainly are not accustomed to reading it. However, this should not stop someone from finding an article and discussing it with you or another health care provider. Often, research is discussed in snippets on the radio, television, or on the Internet in which only the more sensational portions are highlighted. In these situations, it is important to teach the survivor how to locate the article that was discussed. Have the survivor listen for authors’ names, journal names, and institutions conducting the research mentioned in the story.  These are all good leads to help the survivor work with you or a local librarian to find the actual published study. This is also the time when the survivor may become interested in alternative and complementary care.  Many of the effects of treatment can be managed with therapies such as acupuncture or massage in conjunction with traditional medicine. These alternative treatments require some discussion with providers to determine which ones might be best.  These discussions are always more fruitful if the survivor is armed with some understanding of the therapy and its effectiveness based on the scientific literature.

 

3.) Communicate More Effectively

 

We are trained in communication skills, but even in stressful times we do not always use these skills effectively. Since the survivor is coping (and juggling!) with a lot of emotional issues (e.g. family, work, medical), helping him or her be more objective at appropriate times can help. To manage this problem, it is useful to have the survivor keep a journal to note issues that he or she wants to discuss with a health care provider.  In this way, an issue will not be missed when visiting with the provider. Suggesting a symptom log is another way that many of us use in our clinical practice to help our clients get a clear picture of frequency or intensity of symptoms.  The symptom log is also useful when meeting with a health provider to provide a more accurate picture of what is occurring outside of the visits. Many patients become frustrated with their health care providers’ seemingly rushed attitude or lack of time for listening in depth. The time crunch is due to the constraints in our health care system, but you can still provide assistance.  It is helpful to remind the survivor that physicians are “people” too.  Physicians bring with them their own set of experiences that affect their attitudes and emotions.  The issues of transference and counter transference can impact the relationship the survivor has with his or her providers and neither may be aware of it.

 

4.) Form a Strong Support Team

 

For some people, asking for and receiving help is not easy. This can complicate the survivorship process, leaving the survivor without instrument or emotional support. Part of your work with the survivor may be helping them to ask for and accept help. Many people diagnosed with cancer are young and have never been on the receiving end of help. This is a new feeling for them.  It is interesting to mention that many survivors feel the need to volunteer after they are feeling better and treatment is behind them (Matthews et al., 2002). The need to “give back” comes from the survivor’s appreciation of life in new ways and wanting to make the world a better place for all.

 

The other part of the strong support team is family. Family members experience cancer in unique ways both individually as well as collectively. You may need to work with young sons and daughters on their own fears about Mommy or Daddy. Journaling is a good way for older children and family members to get in touch with their reactions and feelings. Younger children (as well as older) may benefit from some of the newer children’s books that are appearing on the market that tell stories of parents with cancer. These books are easy to find at local bookstores and on the Internet. You might recommend that the survivor read these books with his or her children to facilitate communication around some of the more difficult issues.

 

5.) Find the Courage to Change

 

Adopting the “new normal” takes courage to make changes in lifestyles.  Cancer survivors have the same basic healthy lifestyle ideals that we all have: exercise, eat a balanced diet, maintain a healthy weight, avoid tobacco, and limit the amount of alcohol you drink. However, the survivor is dealing with the side effects of treatment that may have left him or her with fatigue, weight gain from the medications, apathy about exercise, or cognitive impairments. The survivor may need support to move beyond “why cancer happened to me” to embracing a future that incorporates lifelong strategies for good health.  When the survivor is ready, adding a plan for healthy lifestyle practices to the survivorship care plan may help him or her adhere to recommendations. You can help the survivor assess the roadblocks that are stopping him or her from sticking to the recommendations. Creating strategies and implementing a plan can seem overwhelming and your intervention, including reaching back to step 4 to help the survivor garner support from his social network, may help.

 

6.) See Life through More Optimistic Eyes

 

By the time we have worked with the survivor through the first 5 steps, he or she is shifting into a more long term look at life. It has been reported that some survivors can feel depressed for up to a full two years after treatment (Wolff et al., 2005). At this point, the “new normal” is becoming more routine, and life has more regular demands, such as work and family issues. Being able to manage stress is critical in this step. Teaching the survivor relaxation techniques may be helpful to reduce the stress. Finally, in appropriate cases, the suggestion that the survivor try medication is something that could be explored with a physician.  This might be another area where you can assist the survivor with additional support and education about antidepressants or anxiolytic medications.

 

7.) Create your Future

 

By the time the survivor reaches step 7, many of the challenges following cancer treatment have been faced and overcome. Step 7 is not just about reacting to issues and situations as they arise; it is more about proactively picking an area of change on which the survivor wants to focus. Cancer survivorship is a journey with these goals leading the survivor into his or her future. For example, the survivor may have successfully returned to work with or without accommodations to the work schedule or environments that need to be managed; but, the focus may shift to relationships with work colleagues. You might suggest that the survivor keep a small notebook of colleagues with whom he or she would like to reconnect and facilitate that process with role playing the initial interactions. This is the time for the survivor to think more broadly including setting manageable goals and the steps that need to be taken to achieve those goals. He or she may need some coaching on how to set reasonable goals and think through the steps.  

 

Conclusions

 

Although the steps are laid out in a linear fashion, the progress is by no means bound by that schematic. You may find that working with the survivorship individual requires supporting your client through one phase only to repeat it with a different focus later on in the process. The client is constantly working to keeping a realistic optimism about his or her “new normal” while taking in information, feelings, and experiences. Revisiting the health care system is likely, but remind the client that he or she is approaching the system with new knowledge of how the system needs to be navigated and how to use the support of individuals serving as patient navigators. The cancer survivorship journey is not a time-limited trip, the journey continues over time. Your work with your client focuses on the client’s experience of the new normal and the realistic optimism while supporting him or her in her journey.

 

Resources

 

American Cancer Society http://www.cancer.org/

 

This is a nationwide, community-based voluntary health organization that is committed to eliminate cancer as a significant health problem. The website provides educational information on cancer, its treatment, research, and ways to volunteer for the organization. It provides local resources and educational materials that are available in English, Spanish, and Asian languages.

 

American Society of Cancer Oncology http://asco.org/

 

This is an academic website that hosts the clinical practice guidelines for cancer care, educational and research resources as well as links for public policy advocacy.

 

Cancer.net http://www.cancer.net/portal/site/patient/

 

Supported by ASCO Cancer Foundation, this site hosts up-to-date cancer information developed and approved by the cancer doctors who are members of ASCO. The organization provides funding for cancer research, professional education, and patient and family support.

 

Journey Forward http://www.journeyforward.org/

 

Journey Forward is a program developed for physicians and their patients who have recently completed active treatment for cancer. The focus is on improving survivorship care. It offers a free survivorship care plan builder for providers.

 

Lance Armstrong Foundation http://www.livestrong.org/

 

This is the website of a nonprofit organization whose mission is to inspire and empower people to live strong.  They provide education, advocacy, public health, and research programs. They have the “LiveStrong SurvivorCare” Program on the site.

 

National Cancer Institute http://www.cancer.gov/

 

Provides scientifically-based information on all aspects of cancer treatment on survivorship care. It provides a list of clinical trials and links to other informative sites.

 

National Coalition for Cancer Survivorship http://www.canceradvocacy.org/

 

The National Coalition for Cancer Survivorship is the longest running survivor-led cancer advocacy organization in the country. It is an advocacy and empowerment organization. NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care.  Patient education is a priority for them and they offer the award-winning Cancer Survival Toolbox® that helps individuals secure quality cancer care.

 

Glossary of Terms

 

American Cancer Society Glossary http://www.cancer.org/docroot/gry/gry_0.asp/

 

 

References

 

Altekruse, et al. (Eds.). (2009). SEER cancer statistics review, 1975-2007, National Cancer Institute. Bethesda, MD.  

 

American Cancer Society. (2010). Cancer facts & figures 2010. Atlanta: American Cancer Society.

 

Campion, Foulkes, Neighbour & Tate. (2002). Patient centredness in the MRCGP video examination: Analysis of large cohort. BMJ, 325(7366), 691-692.

 

Edwards et al. (2009). Annual report to the nation on the status of cancer, 1975-2006, featuring colorectal cancer trends and impact of interventions (risk factors, screening, and treatment) to reduce future rates.

 

Feuerstein & Findley (2006). The cancer survivor's guide: The essential handbook to life after cancer. New York, New York: Marlowe & Company, An imprint of Avalon Publishing Group, Inc.

 

Fontana, Baumann, Helberg & Love. (1997). The delivery of preventive services in primary care practices according to chronic disease status. American Journal of Public Health, 87(7), 1190-1196.

 

Hewitt, Greenfield & Stovall (Eds.) (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: Institute of Medicine and National Research Council.

 

Jacobs, et al. (2009). Adult cancer survivorship: Evolution, research, and planning care. CA: A Cancer Journal for Clinicians, 59(6), 391-410.

 

Kravitz, et al. (1993). Recall of recommendations and adherence to advice among patients with chronic medical conditions. Archives of Internal Medicine, 153(16), 1869-1878.

 

Marvel, Epstein, Flowers & Beckman. (1999). Soliciting the patient's agenda: Have we improved? JAMA: The Journal of the American Medical Association,

281(3), 283-287.

 

Matthews et al. (2002). Health status and life satisfaction among breast cancer survivor peer support volunteers. Psycho-Oncology, 11(3), 199-211.

 

National Cancer Institute. (2007). Key facts about the burden of cancer. (http://www.cancer.gov/aboutnci/servingpeople/WhyItIsImportant/Slide3)

 

National Coalition for Cancer Survivorship. (2010). NCCS. (http://www.canceradvocacy.org/)

 

Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services. Healthy people 2010. (http://www.healthypeople.gov/default.htm)

 

Ransom, Jacobsen, & Booth-Jones, M. (2006). Validation of the distress thermometer with bone marrow transplant patients. Psycho-Oncology, 15(7), 604-612.

 

Robert Wood Johnson Foundation. The chronic care model. (http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2)

 

Spelten et al. (2003). Cancer, fatigue and the return of patients to work-a prospective cohort study. European Journal of Cancer, 39(11), 1562-7.

 

Wolff, et al. (2005). Survivorship: An unmet need of the patient with cancer - implications of a survey of the lance armstrong foundation (LAF) (abstract). Presentation at the American Society of Clinical Oncologists,

 

Yabroff et al. (2004). Burden of illness in cancer survivors: Findings from a population-based national sample. Journal of the National Cancer Institute, 96(17), 1322-30.

 



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