What do I tell my family? Am I going to be able to continue working? How do I pay for treatment? What happens after my treatment is finished?
The answers to these questions are different for everyone because no two people experience cancer in the same way. A cancer diagnosis may make you feel worried, sad, confused, or angry. Your world has changed and is now filled with information and medical terms you never thought you needed to learn. And in addition to the physical difficulties, there are emotional and financial issues that you must learn to manage. Without a doubt, cancer turns your world upside down.
This booklet will help you understand the challenges that are a part of living with cancer and provide you with the tools you need to cope better with this experience. You will learn that you are not alone—there are sources of support available to you.
When someone is diagnosed with cancer, it seems everyone is focused, and rightly so, on the person’s physical well-being especially as it pertains to treatments, side effects, doctor’s visits, tests. There are many aspects of your life that are affected by a diagnosis. For instance, cancer can impact your self-image, work, family, friendships, and how you go about living life.
Experts agree that the standard of care for all cancer patients must include not only addressing the practical impact on the individual, but also how the diagnosis affects a person’s emotional and spiritual well-being. CancerCare’s oncology social workers understand the complexity of issues raised by cancer. More importantly, social workers know that finding ways to cope with these concerns can bring an enormous sense of relief to both the person with cancer and his or her loved ones.
The Value of Oncology Social Workers
Oncology social workers are professionals who provide emotional support to people with cancer. Oncology social workers can help individuals living with cancer access practical assistance as well.
Oncology social workers provide individual counseling, facilitate support groups, and identify resources that can help with home care or transportation. They can offer guidance and help people navigate the process of applying for Social Security disability or other forms of assistance. CancerCare’s oncology social workers are available to help people, free of charge. People can access support through individual and counseling and support groups.
People sometimes mistakenly believe that “coping” with cancer simply means living with a problem, whether you like it or not. But coping actually means finding ways to adapt to a diagnosis. You can’t control the fact that you or a loved one has cancer. But you can manage how you respond and live with cancer.
Counseling to Better Cope With a Cancer Diagnosis
Oncology social workers can help you find ways to cope with the stress of a cancer diagnosis. They can provide guidance and help you and your loved one through the journey of living with cancer. Seeking professional counseling is a strength and good way to help you cope when you are feeling overwhelmed and attempting to adjust to a cancer diagnosis. Face-to-face or telephone counseling provides a safe space to share and examine situations that you may discover yourself challenged by.
One of the biggest challenges for people with cancer is sorting through treatment options. As the science of treating cancer has advanced, researchers have developed better and more effective treatments. This means patients have more choices than they did a few decades ago or even a few years ago.
One of the reasons why making choices can so often be overwhelming and confusing is the vast amount of information that is available. Some of the information may be unreliable. Advertisements on television, and health stories, literature available on the internet, newspapers and magazines add to the deluge of information. It can be difficult to sift through everything. All this in conjunction with your health care team and well-meaning friends and family offering opinions, can contribute to the stress people experience at times
In helping us to take charge of our care here are some tips to help you better communicate with your health care team:
- Recognize that as a health care consumer, it is your right to have a good health care team that listens to your questions and concerns. Get to know all the members of your team and learn how each one helps you.
- Identify one person on the medical team who is in charge of your care and “funnel” all information through that person.
- As you visit different websites or hear about new treatments, write down questions as they arise. At your next medical appointment, bring these questions with you so you can keep track of what you need to know.
- During your medical appointments, take notes or ask a family member to take notes. Also, ask your doctor if you can record your visits. This will allow you to go back later and listen carefully to all the information presented by your doctor.
- Ask your doctor to recommend additional resources and information on your diagnosis and treatment. For tips on evaluating websites, see the sidebar on the right.
- Find trustworthy educational programs about your cancer. CancerCare offers free educational materials from experts on a range of cancer diagnoses and topics. Visit www.cancercare.org to view all of CancerCare’s resources.
Living with cancer can be expensive. Some people may have no health insurance, others may be insured but don’t have coverage for aspects of their treatment, such as prescription drug co-pays. Many people do not have the needed income to meet new costs such as child care or transportation to treatment. People with cancer and their caregivers often have to cut back on time spent at work, which often affects their income at the same time that their bills are building up.
Financial stress often causes emotional stress. For example, when a family is under financial pressures, it can create feelings of worry, sadness, and anxiety. Because cancer treatment often means years of medical care, financial concerns can influence major life decisions about work, housing, and school. There is assistance available, and CancerCare can help you navigate the maze of government, nonprofit, and co-pay assistances programs, as well as other sources of financial help. Here are some of the things you can do:
Talk to your insurance company. Most companies will assign a case manager to help you work through insurance concerns, clarify benefits, and suggest ways to get other health services.
Talk to your health care providers about your needs. Many treatment centers have social workers who help you sort through financial concerns. A CancerCare oncology social worker can also help you.
Find out which government programs (entitlements) you are eligible for, and apply promptly. To contact the Social Security Administration, call 800-772-1213 or visit www.ssa.gov. To contact the Centers for Medicare & Medicaid Services, call 800-633-4227 or visit www.cms.gov. For Medicaid information, contact local listings for a Medicaid office in your state.
Learn how organizations can help you. There are nonprofit programs for co-pay relief that can help those who do not qualify for other aid. To learn more, read CancerCare’s fact sheets titled, “Sources of Financial Assistance” and “How Co-Payment Assistance Foundations Help.”
CancerCare’s A Helping Hand. CancerCare’s A Helping Hand (www.cancercare.org/helpinghand) is a searchable, online database of financial and practical assistance available for people with cancer. This comprehensive online tool features up-to-date contact information and descriptions for hundreds of national and regional organizations offering financial help to people with cancer. You can search by diagnosis, zip code and type of assistance.
Tips for Taking Control of Your Finances
When you or a loved one has received a cancer diagnosis, money may be the last thing you want to think about. But taking control of your finances from the start may be the best way to prevent a crisis later on.
Keep track of important papers. Many people find it helpful to keep their records and paperwork in one place for easy reference. Important documents may include copies of medical records and prescription information.
Get a handle on your income and expenses. Figure out how much money is coming in to your household, how much you spend and what you spend it on. Do you have money saved for an emergency? Do you have assets (a home, other property, a retirement plan, life insurance) that you can use to obtain cash? Have you elected a power of attorney?
Stay on top of medical bills. The consequences of medical debt are staggering and unfortunately all too common. Medical debt can be major burden and a source of continuing stress for many living with cancer. If you find yourself behind on paying medical bills, there are resources that can help. View the resource on the tab to the left.
Get help.Oncology social workers are licensed professionals who counsel people affected by cancer, providing emotional support and helping people access practical assistance.
The words “you have cancer” can be frightening and overwhelming. Some people experience feelings of helplessness and hopelessness and question whether they know how to deal with these feelings. At times, people may be reluctant to talk to their doctor about their concerns because they don’t want to distract him or her from the primary goal of treatment.
Emotional needs vary from person to person, depending on age, closeness of family and friends, access to medical care, and other factors. For example, a 25-year-old person with a cancer diagnosis has different pressures and responsibilities than a person who is 60. Younger people may experience more confusion over having cancer at an age when they usually feel invincible and none of their friends are ill. On the other hand, an older person may have fewer family members to rely who can help care for his or her medical needs.
But no matter what our stage in life, cancer takes an emotional toll on the person diagnosed, as well as everyone close to that person. At CancerCare, we work with each individual, offering support that meets each person’s needs and concerns. It’s important to remember that everyone experiences some kind of sadness or helplessness when confronted with cancer—and that many people learn to cope and adapt to these experiences. Remember that there are many things you can do to adjust to the emotional impact of cancer. To help you cope more effectively while undergoing treatment, you could try the following:
Keep track of your feelings. Many people find it helpful to keep a journal or record their emotions through photography, drawing, painting, music, or other forms of expression. Share your feelings with people close to you. Sometimes, caregivers and people with cancer feel as if they are a “burden” to their loved ones by “complaining” about their problems. Remember that you are entitled to every emotion you have. Don’t be afraid to share these emotions with the people close to you.
Seek individual counseling with a professional. You may feel that the diagnosis is yours alone to cope with, and perhaps feel the need to isolate yourself from others. Oncology social workers, psychologists, and psychiatrists help you sort through your many complex emotions. CancerCare provides free individual counseling to people with cancer and caregivers across the country.
Join a support group. Support groups provide an environment where someone affected by cancer does not have to explain what he or she is going through because the other group members will understand. In addition to lessening one’s sense of isolation, support groups can be a source of valuable information. Not surprisingly, members find that sharing resources and coping skills can be highly rewarding, whether on the giving or the receiving end of the transaction. CancerCare provides free, professionally led support groups over the telephone, online, and face-to-face.
Tell your doctor and nurse about your feelings. Health care professionals understand that patients are concerned about good quality of life as they go through treatment. Sometimes, people benefit from a referral for counseling or treatment for anxiety or depression.
Frequency Ask Questions
Q. My wife was diagnosed with cancer, and we have two young children at home. How do we explain her illness to them?
A. With young children, there may be a temptation to avoid discussing serious illnesses like cancer. You may not want to burden your children with all the complex worries of the disease. But the best thing you can do for them is to give them accurate, age-appropriate information about cancer. Don’t be afraid to use the word “cancer” and tell them where it is in the body. If children don’t get this information from their parents, they will often invent their own explanations, which often can be more frightening than the reality. For example, children may think that they did something wrong to cause the cancer.
It’s helpful to explain the treatment plan and what this will mean to them. For instance, “Dad will bring you to soccer practice instead of Mom.” Prepare your children for any physical changes you might encounter in treatment. Remember that whatever emotions your children are experiencing are normal, and they should be encouraged to express and share these emotions with you and other trusted adults. CancerCare’s specialized services for children affected by cancer help parents and children cope with the effects of cancer on the family.
Q. I know I’m supposed to eat well during treatment, but the chemotherapy makes me feel nauseated, and I don’t have an appetite. What can I do?
A. Nausea is a common side effect in cancer treatment, but it can be well managed with the help of your doctor and anti-nausea medications. Also, there are some things you can do on your own to get relief:
- Avoid strong food odors, which can bring on nausea.
- Rinse your mouth often to eliminate any bad taste.
- Explore how your taste buds may have changed. Determine what foods taste good to you now.
- Wear loose-fitting, comfortable clothing.
- Distract yourself with music, television, or other activities you enjoy.
Q. I am a single person living alone, and I’m worried that when I start treatment, I won’t have the strength to perform basic tasks, like cooking or dressing. I have friends, but they all have their own busy lives. How do I get help?
A. For people with cancer who are living alone, daily chores and tasks can be especially burdensome. Perhaps you don’t want to “bother” your friends or ask them to do simple tasks because it makes you feel helpless. But most of the time, friends are looking for a way to contribute to your care, even if they can’t be there all the time. Try appointing one friend to be your primary caregiver, and have that person organize help from your other friends. Together, they can work as a team to bring your meals, do your laundry, or water the lawn. Having a specific task allows each friend to feel he or she is helping you in a meaningful way. Home care assistance is also available through your hospital, nonprofit agencies, and private organizations. Many times, home care costs are covered by insurance, that is, if the care involves administering medical treatment. See our list of resources for home care on the sidebar.
Q. I’m a caregiver and will need to take time off from my job to care for my loved one. Things are tough enough as it is, and with more medical costs, I’m afraid of being fired and losing income. What rights do I have in the workplace?
A. The Family Medical Leave Act of 1993 (FMLA) gives you the right to take time off if you are ill or caring for an ill dependent, without losing your job. This law:
- Applies to employers with 50 or more employees.
- Can be used to provide medical leave for people with illness such as cancer or family leave for caregivers.
- Provides 12 weeks of unpaid leave for serious illness. You don’t have to take the 12 weeks all at once; you can take time in blocks, such as several hours a day.
- Allows you to use accrued paid annual leave or possibly accrued sick leave during your family or medical leave.
- Defines family members as your parent, child (including adult children who are unable to care for themselves), or your spouse.
- Allows your employer to request a medical certification by a doctor or other health care provider. To learn more about the FMLA, talk to your department of human resources or see our list of resources.
Q. My husband was just diagnosed with metastatic cancer. We’re told that he has become more advanced and we don’t know what to do. Should we go for the most aggressive treatment or seek end-of-life care?
A. It is important that you and your family make the decision that is right for you. Honoring our choices and wishes either at the end of life or whether we decide to undergo treatment can help us cope. Facing our mortality and trying to decide whether or not end-of-life care is the best thing for us can be one of the most difficult decisions to make in our lives. A reaction people may harbor is to first try everything that is medically possible. As with any major treatment decisions, patients and family members can experience a great deal of anxiety and uncertainty. This is normal and to be expected. Nobody likes to think or talk about end-of-life concerns, yet studies have shown that open communication between you, your loved ones, and your health care team reduces distress, helps to alleviate burden of having to make the decision alone, and strengthens our capacity to cope.
The focus of end-of-life care is on comfort and the person’s quality of life. End of life care centers on managing the person’s physical, emotional and spiritual wellbeing during this period. End-of-life care not only addresses issues surrounding pain management but affords emotional and spiritual support as well. Opting for end of life care does not mean that you’ve “given up”, but instead are embracing the inevitability of death. It is a decision the focuses on quality of a person’s life at the end of life. End-of-life care also gives the person with cancer and family members an opportunity to perhaps reconcile and reflect on some of the memories, feelings of sadness, and an array of complex emotions may emerge during this time together. For a list of end-of-life resources, the resources listed in the sidebar at right.