Meeting the Challenges of Cancer Survivorship
Christina Bach, MSW, LCSW, OSW-C, Abramson Cancer Center at Penn Presbyterian
Karen Zatzariny, MSS, LSW, Penn Cancer Network
Last Modified: November 30, 2011
A diagnosis of cancer means a very different thing than it did a decade (and longer) ago. While it's true the very words, "You have cancer" can trigger feelings of anxiety, sadness and vulnerability, the reality is that many people with cancer endure treatment and move on to the rest of their lives, cancer-free. The development of new surgical techniques, drug therapies and state-of-the-art technologies have meant increased survival and a focus on living with cancer as a chronic illness rather than a death sentence. More than 12 million Americans, who have had cancer, are alive today. It must however be said that the journey from diagnosis through treatment to survivorship is not an easy one.
Researchers, oncologists and other cancer care providers have done excellent work improving cancer treatments, managing side effects and extending survival and reaching cures. This has been the main focus for many years. It is also important to consider the other aspects of the cancer experience. These psychosocial concerns can include – emotional difficulties like depression and anxiety, disruptions in the family, at work and school, insufficient financial supports and health coverage.
Recently, there's been a major recognition of the myriad of psychosocial stressors people with cancer face and the potential impact on a person's ability to cope with the diagnosis and treatment. In 2007, the Institute for Medicine (IOM) published a report, "Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs." This paper articulated the importance of meeting the practical, psychological, spiritual, emotional and social needs of people with cancer to achieve the best outcomes possible. The article by the IOM stated that the only responsible way to provide cancer treatment is by building support (in every area) for patients, directly into the cancer treatment plan.
The National Comprehensive Cancer Network (NCCN) is a group of cancer experts in various fields from across the United States. This panel of cancer experts get together to develop a consensus for practice standards and guidelines for cancer care that are evidence-based and generally accepted / followed by most cancer care providers. In recent years, an NCCN subcommittee gave a name to the various concerns of people with cancer. Distress is a "multi-factorial unpleasant emotional experience of a psychological, social and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment." The Distress Management Panel (subcommittee) has adopted a method of screening people for distress as well as devised practice guidelines to be followed to better meet the needs of the whole patient. The ultimate goal of this NCCN panel and the definitions and standards of care they proposed for managing distress in people with cancer is to ensure that no patient's distress go unrecognized and untreated under any circumstance.
Definition of Distress
Distress is common. Feelings of sadness, hopelessness, powerlessness, anxiety, guilt, agitation, anger and uncertainty are present in everyone with cancer at some point in their experience. We all cope in different ways – some ways are more productive and "healthy" than others. There are times when a person's distress can be so high that they will choose not to undergo treatment for their cancer. They may figure that there is no help for the difficulties they're experiencing and so they think that they do not have the capacity to go through cancer treatment. An example could be health insurance related or perhaps concern over losing a job. Sometimes, a health care team will consider a patient who makes a decision to not treat their cancer "non-compliant" or a difficult personality. The team may not even realize what is troubling the person with cancer, beyond the cancer itself, and do nothing further. We know once distress is identified and managed that a person's perspective often changes and enables them to become more willing to engage in treatment decisions and move forward with their cancer treatment.
The Nature of Distress: What does it look and feel like?
The causes of distress vary. Medical conditions, including some cancers, can cause changes in mood and can foster feelings of depression and anxiety. There are also treatments that can simulate feelings of distress. To add to this, our emotions or reactions to this biologically-induced distress can serve to create a "viscous cycle" that can be difficult to break. Distress can also come from our previous experiences with cancer. And so a lack of communication or accurate information can cause distress. We may have misconceptions about cancer and/or we may not feel comfortable talking about it. It's likely that we have other stressors in life that existed prior to the cancer diagnosis. Any and all of these factors can create distress and put us at a higher risk for distress-related problems.
If you consider distress to have a range – one end would be the amount of distress commonly expected or accepted and the opposite would be an amount that was too high to tolerate and severely problematic. Most people move along the range or continuum at various times of their cancer experience and this is normal.
We all can tolerate a certain amount of distress and still function fully. For instance, a person may feel intense distress at the time of a cancer diagnosis when all of the information they receive is new and frightening. This distress may decrease once they begin to process things and adjust to the (often temporary) changes that the diagnosis has created in their life. Often people report feeling less distress once their first treatment is over.
Other times distress can be all-consuming and affect feelings, relationships, thoughts and actions. Distress can create a distraction and prevent a person from hearing vital information about treatment side effects or it can cause someone to become isolated at a time when relationships are important to healing and coping. There is no question that distress can create problems when not recognized and managed.
How You Recognize Distress
Sometimes people with cancer are able to see that distress is affecting their life other times a family member or a health care provider may point this out. Some signs that distress is too high and may interfere with coping and/or treatment include; panic, overwhelming dread, hopelessness, extreme irritability, difficulty eating or sleeping, impaired concentration, obsessive or constant thoughts about the cancer, intense anger, feeling overwhelmed and unable to cope. Of course, feeling suicidal is a form of extreme distress and should be addressed immediately.
The American Cancer Society has included a list of statements in their booklet "Distress in People with Cancer" that can help someone with cancer determine whether they might need professional assistance managing their distress. By rating their experience in each area, the level of distress they are experiencing can be ascertained. An example is "I have been irritable or unusually angry and I have not controlled it well." The person answering would rate their experience on a scale from one to five and would be able to see if they have several fours and fives (higher scores = higher distress) which would strongly indicate a need for professional assistance.
Health care providers have a variety of tools available to screen for distress and determine the source and type of this distress. One such tool is the "Distress Thermometer and Problems List." This simple tool combines rating distress on a scale of one to ten and checking off areas of concern in a variety of areas. When used, this tool can encourage open communication about distress and pinpoint the source and potential remedies and resources available. Referrals can be made to the social worker, dietician, physical therapist and/or chaplain to better address a patient's distress.
Once distress is identified and referrals are made, a plan to address the practical, social, emotional and psychological concerns should be then incorporated in the overall treatment plan. Fortunately, there are many resources available for help.
Now that cancer related distress has been defined and the necessity for screening and evaluation has been demonstrated, it is important to examine the various areas where problems and distress can arise and consider what might be done to decrease or alleviate distress. In this article we hope to describe some of the types of distress that people with cancer face as well as strategies for coping.
Using the NCCN's Distress Thermometer can provide patients and professionals with an excellent tool to identify areas that may impact or influence distress at any point during the cancer continuum. These areas are broken down into five categories; practical problems, family problems, emotional problems, physical problems and spiritual/religious concerns. These areas tend to ebb and flow and certainly problems in one area can impact problems in another. Let's look a bit more in-depth at each of these categories and how they may impact you and your caregivers.
Practical problems encompass a wide variety of everyday challenges that persons coping with cancer may face. The practical problems include child care, housing, insurance/financial, transportation and work/school. These problems often create major challenges for patients and families coping with cancer-from who will take care of the children while mom has chemo, to not being able to keep up with rent/mortgage payments because the patient/caregiver cannot work while going through treatment, to having co-pays for treatment, to deciding when to apply for disability or FMLA or to just getting to treatment or a doctors appointment-practical problems have a huge impact on access to care, timeliness of care and ability to cope with the diagnosis and treatment plan. Often patients are embarrassed by practical problems and do not volunteer this information to their healthcare team members. It is important for patients and caregivers to recognize practical problems and share them with their healthcare team, as many resources are available to assist the patient to better manage these problems.
While a cancer diagnosis happens to the patient, it impacts the entire family and care-giving community around that patient. Patients and support persons have to adjust to changes in the roles they have played in the family as well as potential changes to the relationship. Perhaps dad is diagnosed and no longer able to manage the family finances, or mom is not longer able to take the kids to soccer practice. Maybe the wife no longer can cook meals for her husband after doing so for 30 years. Or maybe the husband is concerned about his change in sexual desires as a result of his cancer treatment. All of these changes to relationship and roles require an adjustment by the patient, family members and caregivers. Often patients and caregivers have to learn entirely new roles (like how to balance a check book, or defrost a pound of ground beef, how to deal with bills, childcare etc.). Often, the most difficult part is communicating the challenges these changes present and working together as a family and caregiving team to address the problem and come up with a strategy to manage it. If patients and families are not talking to each other, then it's very likely that they are not able to communicate effectively with their health care providers. This has a huge impact on care, management of symptoms and suffering and treatment planning. A cancer diagnosis is not the time to circle the wagons and hope for the best. Recognition of cancer as a family process is the first step to addressing problems within the family. Asking for help in this process is often the next step and covered later in this article.
A cancer diagnosis and its treatment can bring about many physical changes to the body. These are often the most difficult things to cope with, because they are constant, visible reminders of the diagnosis and treatment. The Distress Thermometer assessment tool includes problems such as changes in appearance (hair loss), nausea, pain, fatigue, skin changes, sexual problems and tingling in hands in feet as well as many other physical problems or symptoms. These physical problems can also include the patient's ability to complete or participate in activities of daily living (ADL's) such as bathing, dressing, meal preparation/eating, managing finances, using the telephone and managing medications. Again, it is important to normalize the symptoms that can occur as a result of the cancer diagnosis and treatment plan as well as communicate about how these symptoms are impacting the patient's quality of life. Again, there are MANY options for intervention in the management of symptoms and physical changes as well as assistance programs to help with the day to day activities of living life.
It's difficult to imagine a more emotionally charged time than a cancer diagnosis: it is often described as "riding an emotional roller coaster." There are ups and downs throughout the cancer journey from diagnosis, to treatment, to survivorship. Perhaps two of the biggest challenges are learning how to cope with these shifts as well as how to anticipate good and bad days. Patients also must give up a good deal of control over their lives and bodies and trust this to the medical team providing care and treatment. Loss of control is a huge challenge for many cancer patients. Other emotional symptoms that can be concerning are increased depression or anxiety, loss of interest in activities, nervousness, fears, worry, irritability, hope, sadness, anger and substance abuse. These are all common issues that are addressed when assessing the emotional burden of the cancer diagnosis and treatment on the patient and care-giving team. It's not uncommon for patients to seek counseling and alleviation of symptoms through anti-depressant or anti-anxiety medications. Many patients and family members also seek out support and guidance through connections at support groups and other educational opportunities where they can connect with others who have like experiences.
Existential questions are pervasive when coping with a cancer diagnosis. These questions include (but are not limited to), "Why me?"" Is GOD/higher power punishing me?" "Will I go to heaven? "What happens when I die?" "If I had been a better person would this have happened?" These questions are difficult to answer and often require close work with spiritual counselors, chaplains or ministers/priests/rabbis to help work through. They should NEVER be ignored as part of the psychosocial treatment plan, simply because of a lack of understanding or a difference in religious/spiritual background. It is important to communicate these concerns and questions to your team so that appropriate religious/spiritual support can be accessed and coordinated as part of your treatment process.
Factors that can put you at a "higher risk" for increased distress
Certainly a cancer diagnosis can trigger anxiety, distress, existential crisis in ANY patient, but some patients have pre-existing issues that may place them at risk for a heightened sense of distress and difficulty coping with that distress associated with their cancer diagnosis and treatment. Some of these risk factors include (but are not limited to): previous diagnosis and treatment for mental health issues (depression, anxiety, schizophrenia, obsessive-compulsive disorder etc), previous substance abuse, a personal history with cancer (i.e. another close family member or friend who has been diagnosed, treated or perhaps died as a result of cancer or perhaps a previous cancer diagnosis of the identified patient), uninsured/underinsured, those with young children, those who are acting as caregivers to another family member (spouse, parent, child with special needs), those with a history of pre existing medical conditions that may impact their cancer treatment options, and finally those with housing or financial issues. Many patients are not willing or even able to discuss these matters with a brand new team of oncology practitioners, however it is extremely important that you establish rapport and trust with your cancer treatment team and talk to them about what you are bringing to the table BEFORE treatment planning is discussed. Oncology social workers are skilled at helping identify and work through issues as well as identify resources that can provide assistance and relieve distress.
Identifying strengths to fortify resilience
Resiliency is defined as "(noun) (1) the power or ability to return to the original form, position, etc., after being bent, compressed, or stretched; elasticity (2) ability to recover readily from illness, depression, adversity, or the like; buoyancy (dictionary.com)." By identifying the strengths of an individual, social workers and health care practitioners work to bolster the resilience of their patient's and their patient's own abilities to overcome adversity, cope with set backs and bad news and receive and thrive after getting good news. Just as having a personal history with cancer may be a high risk for distress, it may also be an enormous strength to the patient in that, they have some idea of what to expect and where to turn for help. Those with a previous diagnosis of a mental health issue are often well connected with support communities who will ALSO support them through their cancer diagnosis. This is an enormous strength.
MOST people are naturally resilient. We have an ability to bounce back and cope with tragedy, problems, let downs and adversity. This does not mean we have to be Polly or Peter Positive just to get through our cancer treatment. This DOES mean that we should address all of the good and bad, positives and negatives, and the ups and downs throughout treatment. This is a hallmark of adjusting to your new life as a cancer survivor. Individual and family strengths lead to increased resilience which in terms leads to adjustment. Focusing energy on resilience and strengths shifts the emphasis from the negative, pathologic and the counter-productive. Highlighting strengths is a patient centered model of care that relies heavily on the your motivation to identify, capitalize on and foster resilience as a powerful tool in coping with your cancer diagnosis, treatment and survivorship. To begin taking stock of your strengths as well as gauging your capacity for resilience it is important to assess, "just what do I have going for me?" The global assessment includes:
- Your family/care-giving systems- Who is available for physical & emotional support?
- Your concrete resources-Transportation, housing, food, clothing, medical insurance
- Your ability to complete activities of daily living (ADL's)-Can I bathe, dress, groom, toilet, shop, cook, manage medications, do laundry, drive or manage my finances? A great checklist for ADL's is available at www.pbs.org/caringforyourparents
- Your coping history-How have you managed previous challenges in your life?
- Your risk factors for challenges to coping and resilience- Substance use/abuse, mental health issues, prior experiences with cancer/life threatening illness
- Your spiritual support network
- Your financial resources-Can you apply for disability, continuing working, maintain your health insurance
This looks a lot like the distress thermometer—which I why it is such a great tool for helping to create a jumping off point, identifying not only areas that may cause distress, but areas that DO NOT cause distress. These are the areas that you can capitalize as strengths and build on your resilience. The key is to identify your strengths and communicate areas where you may need help.
Asking for help
Sometimes the hardest thing to do is ask for help. We typically like to do things for ourselves and not be dependent on others for our well being and functioning. Cancer can put a wrench in this hardwired independence and force you into a position where you need help. It may be asking a friend to drive you to treatment, contacting an attorney to assist with disability applications, talking to your social worker about getting a wig, or asking your minister for spiritual guidance. All of these requests for assistance are normal and most include help that is readily available to you and your family. Don't be afraid to ask for help, and don't let asking for help contribute to your distress.
Where to find help-resources and reliable information
It is important to access information about where to get help from reliable resources. Here are some basic guidelines:
- Get suggestions and referrals from your social worker or navigator
- Use the internet WISELY; watch what sites you are getting information from; .org and .edu sites tend to be from non profit or educational institutions and typically have unbiased, reliable information
- Talk to other cancer patients. They are often a wealth of information and will share experiences and resources. You can do this through a support group, the Cancer Support Community, via Peer to Peer programs such as the Cancer Hope Network or the Leukemia and Lymphoma Society's First Connection Program, or at an educational session. Maybe you will encounter someone at church or at work who has also been through this and can provide great tips and tricks.
Moving Forward and Beyond
Once treatment is completed, many people experience a period of "mixed-emotions." While it's true there is great cause for celebration and relief, it's not always as straight-forward as that. Many survivors express needing time to feel "normal" again. Others say that there's a "new normal" and that they look at life differently once they've been through a cancer diagnosis and treatment. There are a few common experiences felt by most survivors at one time or another. It's important to realize that you are not alone in feeling ambivalent or even sad or worried. There are ways to get help and gain perspective after treatment ends as well.
There is a recent recognition of cancer "survivorship" issues that are being examined in the field of oncology. There are physical, emotional, psychological and practical concerns that arise and may need attention once cancer treatment stops and someone is expected to return to their pre-cancer lives.
Late effects of cancer treatment often occur and require follow up and surveillance for at least a period of time if not forever. It is important to understand the impact your cancer treatment may have on your long-term health. This may not have been a concern before, when surviving the cancer was your main objective. A growing practice in oncology has been survivorship education and follow up care. The utilization of End of Treatment Summaries and Care Plans have been a revolutionary way to capture vital information and communicate key issues to patients and their health care providers. Often an oncologist or nurse will work with a patient to collect information on the cancer treatment they received so that potential side effects and ways to monitor for these can be determined. These care plans can be distributed to all of the physicians who care for that patient – family doctor, cardiologist, gastroenterologist etc. This document includes what tests are required to monitor for potential side effects and screen for other future cancers. There are tools available to oncologists such as the OncoLife Survivorship Care Plan, which is an OncoLink project allowing patients and healthcare providers to generate individualized survivorship care plans. This type of tool can help you make the most of your cancer survivorship and quality of life. You may have many questions about your follow up care and current and future condition. These care plans can increase communication between you and your doctor and get your questions answered.
Some cancer survivors are left with lingering medical concerns that may need to be addressed. Fatigue, pain, swelling, insomnia and other symptoms can all be a result of past treatment for which there may be assistance. Survivors need to know that these and other symptoms are important and their doctor should be informed when they occur.
You also may want to consider a plan to achieve and maintain wellness. For instance, if you smoke and you wish to reduce your risk for future cancers, you will want to quit and may need assistance and a plan to do this. You will also likely want to consider incorporating a healthy diet and exercise program into your life. Your health care team can help you with this. Most survivors feel less anxiety about future health when they do what they can to improve it.
Some survivors may want to become educated on what potential risks exist for their family. While it is true that only a small percentage of cancers are thought to be inherited, there are some cancers and family patterns that warrant a closer look. Many cancer programs now include cancer risk education and testing when appropriate. You can inquire with your oncology care team about this aspect of survivorship.
In addition to the medical side effects from past treatments, you may experience some emotional or social adjustment concerns. In some cases, survivors re-enter the work force and this can be a challenge – dealing with interviews, questions related to past medical history, new health insurance providers. Others will want to re-establish connections to friends and family that perhaps have not been as present over the time of treatment for various reasons. These can be challenging areas and there is support available for those survivors who encounter this type of thing. The National Coalition for Cancer Survivors (NCCS) is a non-profit patient advocacy organization with lots of support and educational materials available to those who wish to receive it. Their web site provides much of this information at www.NCCS.org.
Most survivors worry about recurrence. This is understandable-this uncertainty can be disconcerting to say the least. Typically this anxiety becomes less consuming over time. Sometimes cancer survivors need to seek counseling to be able to talk about this worry and gain perspective on moving on with their lives. Others experience depression and anxiety that require medical and counseling intervention. This is often a temporary state but one that is real and can limit a survivor's ability to cope. Similarly, some survivors are faced with complex emotions such as guilt and depression, grief... These are not uncommon especially when you consider the fear and worry that are experienced during the treatment phase of cancer. Counseling and support is available through your cancer center's social work department and community and national resources.
There are also very positive experiences had by cancer survivors – many describe having a renewed appreciation for life and those around them. Some decide to make changes in their lives to be happier – perhaps a change in career or a decision to move closer to family…Some people who have been through an experience with cancer adopt a new lifestyle focused on health and well-being. While others are thrilled to re-join the activities they enjoyed prior to their cancer diagnosis – but perhaps now with a new vitality and appreciation for health.