Today, more people are living with and beyond cancer.
Nearly one in two men and one in three women will develop some form of cancer during their lifetime. Each year in the United States alone, 1.4 million people are diagnosed with cancer. The good news is that more people are living with and beyond cancer.
In the 1970s, less than 50 percent of people with cancer lived five years or more after their diagnosis. Now, nearly 70 percent of people with cancer live five years or more. The number of post-treatment cancer survivors in the United States (those who have finished their prescribed cancer treatments) has grown to about 12 million.
This e-booklet aims to help people who were diagnosed with cancer in their adult years and who have finished treatment. In these pages you will learn about:
- How to manage the short- and long-term physical effects of your cancer and treatment
- Sources of support for emotional and spiritual concerns
- Tips for managing your finances
- Answers to common questions about life after treatment
- Resources that can improve the quality of your life and health
Medical Issues After Treatment Ends
Researchers and health care providers now have a better understanding of cancer and how to treat it. But we are only beginning to appreciate the long-term effect cancer has on all aspects of a person’s life after treatment ends. For instance, doctors now know that nearly three-quarters of all cancer survivors experience some type of physical symptoms resulting from medical treatments they received for their cancer.
Some side effects you had during treatment can continue afterward, while other side effects may show up months or even years later. And although some side effects can be temporary, others may be longer lasting, serious, or even life-threatening. It’s important to let your health care team know about any symptoms you experience so they can help you manage them.These are some common side effects that may result from cancer treatment:
Fatigue You may notice that you become tired more quickly when doing routine tasks or lack the energy for activities you used to enjoy.
Memory and thinking problems Often called “chemobrain,” this side effect of chemotherapy causes some people to have trouble remembering simple things.
Changes in your diet The way in which certain foods taste, the foods your body will tolerate, and your ability to taste or enjoy food may be affected.
Bone or joint pain It’s important to maintain your bone health with medications your doctor may prescribe and/or a proper diet.
Changes in appearance Hair loss or scars from cancer surgery can affect a survivor’s quality of life and self image.
Neuropathy Some chemotherapies can cause numbness, tingling, or pain in the hands or feet.
Lymphedema When lymph nodes are removed during cancer surgery, swelling in the arms, legs, neck, or face may occur because of fluids that build up in those areas.
Changes in intimacy and sexuality Both women and men can experience changes in fertility (ability to have a baby), sexual functioning, or how they feel about their body or appearance, which can affect intimacy.
Lingering side effects can be frustrating, especially when you expect to feel better when treatment is over. Keep in mind, though, that many side effects gradually lessen with time as your body heals and recovers from treatment. However, people experience these changes at different rates and in individual ways. It can be very useful to keep a daily log of any side effects you experience. Note the date and time the symptoms occur and rate them on a scale of 1 to 10 to measure how strongly they affect you. These notes will make it easier to share details of your symptoms with your doctor.
Many cancer treatments put you at an increased risk of developing serious long-term health conditions that must be watched or managed throughout your life. Some of these conditions may include:
- Osteoporosis, a condition in which bones thin and become brittle
- An increased risk of stroke
- Premature aging
- Reduced functioning of organs affected by treatment
Because of the many side effects and other health conditions that can occur, finishing cancer treatment gives way to a new period of follow-up care. During this time, your health care team continues to monitor you. This is often referred to, in medical terms, as “surveillance.” Your doctors check for side effects such as those discussed above. They also look for symptoms of recurrence (the return of a cancer), cancer spreading to other parts of the body, or new cancers developing.
The Survivorship Care Plan
One helpful tool for managing your follow-up care is a survivorship care plan. This document includes a summary of your diagnosis and all the treatments you received, as well as a follow-up plan of the steps you need to take to achieve the best health and well-being possible. The survivorship care plan is a very important part of follow-up care for everyone who completes treatment for cancer. It helps you work effectively with your primary care doctor as well as other members of your health care team. You can use the checklists provided below as a guide.
TREATMENT SUMMARY CHECKLIST
Ask your doctor for a treatment summary, which should include:
The type and stage of the cancer(s) you were diagnosed with, as well as the date you were diagnosed
The types of treatment you received (including surgical procedures, names of chemotherapy drugs, radiation doses, and all tests that were performed) and dates received
Complications experienced (such as side effects, transfusions, and hospitalizations)
Other treatments used (such as physical therapy, acupuncture, herbs, vitamins, or other alternative treatments)
FOLLOW-UP PLAN CHECKLIST
Discuss with your doctor what your follow-up care plan will be. This should include:
A description of your state of health at the end of treatment
A future schedule of visits (time and date)
Who will deliver follow-up care (and where)
Tests that will be done and why they are needed
What long-term effects might occur (such as swelling or numbness in the limbs, pain, or depression), how to watch for them, and how they will be treated
Symptoms to watch for that might signal a return of your cancer
Steps you can take to adopt a more healthy lifestyle
Returning to Work: Laws You Should Know
Many cancer survivors are able to continue working through and beyond their treatment. They may miss only a few days of work or require just a temporary adjustment in their work schedules. Others may have to stop working during treatment and return later. Whether you continue to work may depend on your workplace; each company has its own unique culture.
Many organizations are supportive of employees during and after treatment. For example, some employers proactively let their employees know what options are available if they want to continue working. However, sometimes employers and coworkers may assume that a cancer survivor is unable to perform job responsibilities as well as he or she did before the cancer diagnosis. It is important to know the laws that protect you in the workplace, including:
The Americans with Disability Act (ADA) prohibits discrimination against people with disabilities. Organizations with 15 or more employees must follow ADA guidelines. To qualify for ADA protection, you must:
- Meet the ADA definition of a “disabled person”
- Qualify for the job and be able to perform its essential functions
- Not pose a risk to your own or others’ health and safety
- Not cause “undue hardship” to your employer for any accommodations you might need
People living with and beyond cancer often need flexible work hours in order to go to medical appointments. Sometimes, restructuring a job or reducing the number of hours you work may be considered reasonable, especially if you work through treatment or plan to return to the workplace after treatment ends.
If you require flextime, it is important to tell your supervisor or your human resources department about your cancer history in order to be protected under the ADA. If you don’t give any reason for frequent flextime requests, you could risk losing your job. For more information, call 1-800-514-0301 or visit the ADA website, www.ada.gov.
The Family and Medical Leave Act (FMLA) enables people dealing with a serious illness, or one of their family members, to take unpaid leave for up to 12 weeks within one calendar year. The FMLA applies to organizations with 50 or more employees.
The employee must have worked with his or her employer for at least one year, and employers must continue providing health benefits during the leave. Leave does not have to be taken all at once but can be taken in blocks of time. To learn more, visit the U.S. Department of Labor’s website at www.dol.gov and search for FMLA.
If you feel you are being treated unfairly, contact the Equal Employment Opportunity Commission (EEOC). The EEOC is a federal agency that enforces the provisions of the ADA and FMLA and helps people who feel they have been discriminated against in the workplace. Call 1-800-669-4000 or visit www.eeoc.gov.
Financial Help When You Are Unable to Work
Some cancer survivors who have been employed choose to retire. Others may not be able to return to work as a result of complications from their illness. If you are unable to work after your treatment ends, there is help. Some options for cancer survivors in need of health insurance include:
Medicare and Medicaid Medicare is a government provided health care plan for people 65 and older and those who are disabled (cancer may qualify as a disability). Medicaid provides health care services for people under a certain income level. Contact the Centers for Medicare and Medicaid Services at
1-877-267-2323 or visit www.cms.gov to find out whether you are eligible for these programs.
COBRA If you have left a job recently and were covered by an employer’s health insurance, you may be able to continue your coverage under COBRA (the Consolidated Omnibus Budget Reconciliation Act). This law requires employers to make available health insurance coverage through their plan to former employees for up to 18 months after employment has ended. Beneficiaries are required to pay for COBRA coverage. Visit the website of the U.S. Department of Labor, www.dol.gov, to learn if you are eligible. Find out, too, whether your state offers basic unemployment health insurance coverage.
For sources of income, find out if you are eligible for Social Security Disability Insurance or Supplemental Security Income by calling 1-800-772-1213 or visiting the Social Security website, www.socialsecurity.gov/disability. Life insurance policies and retirement plans can also be sources of cash.
Should you be laid off from your job, immediately apply for unemployment insurance through your state employment board. The amount of benefits varies from state to state, and benefits are provided only for a short period (usually 26 weeks). Most states require some sort of proof that you are seeking employment while drawing unemployment benefits.
Tips for Managing Medical Debt
Whether or not you are insured, you may find yourself struggling with outstanding medical bills from your cancer treatment. Consider the following options.
IF YOU ARE INSURED
Read your insurance policy and understand the terms of your contract. If you have questions, ask your insurance company, insurance broker, or the human resources staff at your place of employment to explain it to you. Your insurer may have denied a claim even though you are entitled to coverage. The Kaiser Family Foundation has an excellent guide on how to dispute claims with your insurer. For more information, visit www.kff.org/insurance/consumer.cfm.
Ask the hospital or doctor to consider the insurance payment as “payment in full.” Many people don’t think to do this, and it is often more successful than expected. Some hospitals have funds to offset medical services that aren’t fully covered by insurance.
WHETHER OR NOT YOU HAVE INSURANCE
Double check all bills and EOBs (explanation of benefits). You’d be surprised how often billing mistakes are made. If you don’t receive an itemized bill, ask for one. Look for incorrect dates of service (for instance, you shouldn’t be billed for the room on the day you were discharged) and fees billed more than once for the same test or procedure.
Negotiate the outstanding balance by asking for a discount. According to a Wall Street Journal survey, 70 percent of adults who talked with a hospital said they were successful in negotiating a lower price for their medical bills; 61 percent were successful with their doctor. You will likely get a greater discount (sometimes as high as 50 percent) if you pay the outstanding balance in a lump sum.
Work out a payment plan. Often, doctors and hospitals are willing to negotiate interest-free monthly payments.
Seek out help from nonprofit organizations such as the Patient Advocate Foundation (1-800-532-5274 or www.patientadvocate.org) and CancerCare.
CancerCare Can Help
Cancer is a major event in anyone’s life. Although no two cancer survivors will face the exact same circumstances or concerns after treatment, many survivors have similar questions, such as “Will I recover?” “What happens next?” “Will the cancer come back?” and “What is normal now?”
This e-booklet has described some of the resources that exist for post-treatment survivors. You can find more help and support by talking directly to a CancerCare professional oncology social worker. We can help you find resources in your community. We also provide free counseling, support groups, education, and financial assistance.
To learn more about how CancerCare helps, call us at
800-813-HOPE (4673) or explore our website, www.cancercare.org.
Frequently Asked Questions
Q. It has been a year since I finished treatment, and I am trying to take things day by day. But I worry about my family and taking care of their future. What should I be doing to make sure they’ll be okay?
A. Providing for your family’s future security can be included in your Cancer Survivorship Plan. It’s important to have a financial plan, one that details your assets, savings, retirement accounts, investments, and any expected income from these sources. The Lance Armstrong Foundation (1-866-673-7205 or www.livestrong.org) offers worksheets that can help you organize all of this information and make it easily accessible.
A financial plan also details your expenses, including all the costs associated with your treatment. Your plan should state future goals for how to cover your expenses and list alternative sources of income if you are unemployed, on disability, or earning less income after treatment ends. Seek out a professional financial planner, who can help you create a plan based on your individual circumstances. The American Cancer Society offers several helpful booklets on financial concerns for cancer survivors and their families, including How to Find a Financial Planner Sensitive to Cancer Issues. You can download the booklets from www.cancer.org or order them by calling 1-800-227-2345. (For more practical tips on finances, see the next question and answer below.)
You also want to make sure that you have other important documents in order, including power of attorney, a living will, and a regular will. With “advance directives,” you put into writing your wishes. Be open with your loved ones about your concerns, your present abilities, and any changes in your physical or emotional state since ending treatment and how these changes might affect them. Fostering open communication with your loved ones will help them feel more secure about your future and theirs and will allow them to share any concerns or questions they might have. Also, recognize that professional support might be helpful to them, as a cancer diagnosis affects the entire family.
Q. The financial impact of treating my cancer has hit me and my family hard. The bills just keep coming, and I am having trouble keeping on top of them all. How can I manage them?
A. Cancer is a very expensive illness. Even with insurance, most people are financially unprepared for the out-of-pocket expenses for their medical care. Covering general daily living expenses can also be challenging, especially when your treatment and follow-up care have prevented you from earning a regular income.
Getting organized can give you a greater sense of control over your life and priorities, including financial matters. Here are a few simple tips from Cancer.Net for organizing your bills and other paperwork:
Keep all cancer and treatment information in one place, in a filing system that works for you and makes it easy to find information. Keep bills and important papers in clearly labeled folders, and file new information as soon as possible, so it doesn’t get lost.
If you have health insurance, ask your insurance provider to assign you to a case manager, so you can talk with the same person each time you need to call. Take written notes of any conversations with insurance company representatives, including the date, name of the person you spoke with, and what was said.
Determine which bills demand payment, which can be deferred, and which ones you can arrange a payment plan for. Negotiate payment plans for your monthly bills with your utility company, phone provider, and other creditors who may offer assistance programs to people in need.
Read Cancer.Net’s guide “Managing the Cost of Cancer Care” for more tips. For additional guidance in managing medical debt, call the Patient Advocate Foundation (1-800-532-5274) to speak with a trained case manager, or visit their website, www.patientadvocate.org.
Q. I am finished with treatment and currently cancer-free. Yet I am fearful that the cancer will come back. What can I do to lessen my anxiety?
A. Fear of recurrence is not at all uncommon for cancer survivors, and you are not alone. It’s important to address your concerns, because over time, ongoing anxiety may lead to fatigue and depression. Take control of those things you can influence. Here are a few practical suggestions to help you better manage anxiety:
Engage in activities such as yoga and relaxation techniques: deep breathing exercises, meditation, and guided imagery are a few examples.
Seek out support. Speaking with others in a support group can help relieve anxiety and provide you with new ways of coping.
Express your feelings to a counselor one on one in a nurturing environment. The process of openly exploring emotions helps many people feel less anxious.
Make healthier choices. These choices may include increasing physical activity and adjusting your diet.
Stay actively involved in your follow-up care by asking your doctor specific questions about the likelihood of recurrence. Discuss what you can do to minimize your chances of recurrence.
MEDICAL INFORMATION FOR SURVIVORS
American Cancer Society
Survivorship information from the American Society of Clinical Oncology
National Cancer Institute
Office of Cancer Survivorship
COUNSELING AND SUPPORT GROUPS
Cancer Support Community
INSURANCE AND LEGAL CONCERNS
Medicare and Medicaid
Americans with Disability Act (ADA)
Cancer and Careers
Consumer Guides to Getting and Keeping Health Insurance
Equal Employment Opportunity Commission (EE OC)
Kaiser Family Foundation
Patient Advocate Foundation
U.S. Department of Labor
Lance Armstrong Foundation
National Coalition for Cancer Survivorship (NCCS)
Cancer Financial Assistance Coalition
Partnership for Prescription Assistance
U.S. Social Security Administration
For information on Social Security Disability Insurance or Supplemental Security Income