CanSearch™ Next Steps: Your Life After Cancer

NCCS's Step-by-Step Guide to Online Post-Treatment Cancer Resources

Congratulations on completing your cancer treatment!  Now What?

For many of the nation’s 10.5 million cancer survivors, the end of treatment can be bittersweet. Although you are happy to end treatment, you suddenly end a routine that has become the “new normal” for you. Oftentimes, the end of treatment means less-frequent contact with your health-care team that has surrounded you over the past months and years. Ellen Stovall, NCCS President and CEO and 35-year cancer survivor, explains that it seems like you “fall off a cliff when your treatment ends.”

Whether you recently ended treatment or have been off treatment for years, this guide seeks to ease some of your anxiety about life after treatment by explaining the special needs of cancer survivors, what you need to do to remain as healthy as possible, and how you can use your experience to help others.

Facing many of issues associated with cancer survivorship may seem overwhelming, but remember that you are not the only person who is experiencing these issues. The information presented here is not meant to upset or scare you; rather, learning about the possible issues will make you a better advocate for yourself. If you are concerned about any cancer/treatment issue, don’t be afraid to speak up and ask for help, whether it be from your family, friends, doctor, or other support system.

Be sure to also listen to our Cancer Survival Toolbox® module on Living Beyond Cancer, which covers living with after effects, intimacy, family communication, emotional aspects, getting your house in order, and living with hope. 

Your Life After Cancer Treatment

While this is a milestone to celebrate, it also represents a new beginning in how to best care for yourself after treatment. The reality is that while you might be cancer-free, you are not free of cancer. Once diagnosed with cancer your treatment becomes a part of your medical history that will influence how you manage your healthcare going forward. Improvements in cancer treatments have allowed many cancers to be managed as chronic conditions that need coordinated follow-up.

Simply put, a diagnosis of cancer changes your health-care needs for the rest of your life.

As a cancer survivor you may face several challenges in the years following your treatment including:

• Cancer recurrence: a reappearance of the original cancer

• Second malignancy: development of a new and entirely different cancer

• Effects of organ damage: damage to organs such as the heart, lungs, ovaries, testicles, bone marrow, etc.

• Emotional and social issues: some of the most common include stress and depression, employment discrimination, and access to adequate health insurance

Although research in the field of cancer survivorship is underway, little is currently known about how to diagnose, prevent, and screen for the late effects of cancer. This means that it is extremely important for you to be your own health-care advocate. Below is information about assuring access to the highest quality care after cancer treatment.

Survivorship Care Plan

Having a detailed description of your cancer treatment will assist your doctor in developing the best post-treatment care for you.  Upon completing treatment, request a formal consultation with your doctor and ask him/her for a Cancer Care Summary (a summary of your diagnosis and treatment) and a Survivorship Care Plan (a plan for follow-up care after primary cancer treatment).

Your Cancer Care Summary and Survivorship Care Plan should include, but is not limited to:

• Your cancer diagnosis, treatments received (including names of the drugs and dosages) and their potential known long-term effects;

• Specific information about the timing and content of recommended follow-up (for example, screening tests for recurrences and/or secondary cancers, follow-up visits with your oncologist, etc.);

• Recommendations about preventative practices and how to maintain health and well-being (for example, nutrition, exercise and emotional support);

• Information on employment rights as a cancer survivor and access to health insurance;

• Availability of emotional support services in the local community.

During the consultation ask your doctor and/or nurse to explain this Cancer Care Summary and Survivorship Care Plan to you. It is important that you understand it. You should keep it in a safe place where you store other important personal documents and provide copies to all other health-care providers who examine you in the months and years to come.

Several Cancer Care Summary and Survivorship Care Plan templates exist to make it easier for you and your doctor. 

• The Children’s Oncology Group offers Long-Term Follow-Up Guidelines (PDF) that help doctors provide recommendations for screening and management of late effects that may result from treatment for pediatric cancers.  This thorough document includes detailed descriptions for physicians filling out the form. 

• The Lance Armstrong Foundation (LAF) has a Cancer Survivor’s Medical Treatment Summary form (PDF) for anyone treated for cancer.  LAF also provides a Cancer Survivor’s Health Journal (PDF) and Practical Information Summary form (PDF) as tools for cancer survivors. 

Physical Late Effects

Many people believe that once treatment is over, they no longer have to worry about problems relating to their cancer and its treatment. It is important to keep in mind, though, that there are risks associated with being treated for cancer. While simply being a cancer survivor does not mean you will suffer from late effects, it is important to be aware of the issues so you can work with your health-care team to find any problems sooner rather than later. It is normal to have anxiety about these issues. Many survivors suffer from late effects, but they are often manageable and treatable.

Remember, you know your body better than anyone. So if you feel that something may be wrong, address your concerns with your health-care team. If you do not feel your doctor understands your issues, you may need to choose another if possible.

Late effects begin once treatment is over and may include recurrence, secondary malignancy, organ damage, and emotional and social issues. Researchers have recently begun looking into the late effects of cancer treatment, and we now know much more about how chemotherapy, radiation, and other treatments affect survivors many years post-treatment.  However, there are often no straight-forward answers for individuals, causing frustration and anxiety for many survivors. 

While some doctors may take the “wait-and-see” approach, your Care Summary and Survivorship Care Plan will provide you and your health-care team with a foundation to determine the late effects for which you may be at risk. 

Your primary care physician might not be familiar with late effects issues, so you may want to provide your doctor with some information.  A good starting point is the Institute of Medicine’s (IOM) 2005 report entitled From Cancer Patient to Cancer Survivor: Lost in Transition or the IOM’s 2003 report entitled Childhood Cancer Survivorship: Improving Care and Quality of Life.

Many of the studies on late effects focus on survivors of childhood cancer, but the research may be useful to anyone who has completed treatment.  Click on the links below for more about late effects from cancer treatment:

• The National Cancer Institute

• The Mayo Clinic

• The American Cancer Society

• Candlelighters Childhood Cancer Foundation

• Beyond the Cure offers information on late effects as well as a Late Effects Assessment Tool as a guide to help determine possible late effects given your specific treatment

• The Association of Cancer Online Resources

• The Children’s Oncology Group offers Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.

Fertility

Once treatment is over, cancer survivors sometimes face fertility issues. Although it may be a touchy topic, you should ask your health-care team any questions you have about fertility.  For more information, Fertile Hope, People Living With Cancer, and CancerBACUP provide information specifically for cancer survivors.  The American Society for Reproductive Medicine also has a fact sheet about fertility before and after treatment.

Survivorship Clinics

For many cancer survivors there is often a transition from an oncologist to a primary care physician after treatment.  However, some survivors find cancer survivorship clinics particularly beneficial in their post-treatment care. 

The Cancer Survivor’s Project provides a list of survivorship clinics by state.

Nutrition

Maintaining a healthy lifestyle is important during and after treatment. 
It's a great sense of relief, for most people, when the final treatment for cancer is given, and it is time to resume "normal" life.
However, for most cancer survivors, the end of treatment will not mean an immediate return to full strength and energy. The aftermath of treatment can often mean lingering side effects and reduced energy. 
Here are some steps to take to manage your post-treatment nutritional activities:

• Manage side effects. If you continue to experience side effects like weight loss, indifference to food, or food continues to taste bad, don't hesitate: contact your health-care team for advice and assistance. Continuing weight loss is an issue of special concern.
• Consult a dietician. Arrange for a post-treatment consultation with a registered dietician used to working with cancer survivors to discuss your post-treatment nutrition plan. Expert advice will be useful to you in making choices about what you eat. Visit www.eatright.org to find a dietician. 
• Reality check. Understand that there is no evidence that diet can prevent recurrence of your cancer. Eating well will help all of you feel better — body, mind, and spirit — but there is no magic diet to eat to ensure that your cancer will never return. Don't succumb to wild promises of the "anti-cancer guaranteed diet" or other wild claims you may hear.
• Eat well, following the best advice available. Registered dieticians and other health experts at the National Cancer Institute recommend:
  
  • Fruits and vegetables, cooked or raw, are a major source of antioxidant vitamins — and these are what help your cells repair themselves. Eat five or more servings every day, being sure to include citrus fruit, green and yellow vegetables.
  • Whole-grain breads and cereals are an excellent source of antioxidants, vitamins, complex carbohydrates and fiber. Consider adding a quarter cup of wheat germ to cereals and other foods for an excellent whole-grain boost every day.
  • NCI recommends going easy on fat, salt, sugar, alcohol and smoked or pickled foods, as well as using low-fat milk products. Also recommended is using lower-fat cooking methods such as broiling, steaming and poaching, as opposed to frying.
• If you continue to lack energy, and don't feel yourself gradually becoming stronger, you may have a low red blood cell level (hemoglobin and hematocrit). Have your health-care team test for this. If your numbers are low, you should increase the protein in your diet, having a good source of protein at meals at least twice a day, with the goal of consuming at least eight ounces every day. Nutrition experts recommend consuming citrus at the same time as you eat protein, to boost the impact of the iron in the foods you eat. It usually takes several months before red blood count levels are increased, so some patience and diet consistency are needed.
• For recommendations for a healthy diet, consult materials produced by the US Department of Agriculture and the US Department of Health and Human Services. These are available at no cost on the Internet. 

For more resources on nutrition specifically for cancer survivors, visit the American Institute for Cancer Research, Cancer Project, or American Cancer Society.

Emotional and Social Issues

Emotional Stress
The emotional stressthat cancer causes can take many forms: anxiety, anger, depression, frustration and grief are all very common. In fact, researchers have found that 1/3 of people with a cancer diagnosis experience anxiety and depression serious enough to require professional help. It is normal to feel some level of emotional stress even after you finish your cancer treatment. Don’t be afraid or embarrassed to seek help.

The Lance Armstrong Foundation offers information on a variety of emotional issues for cancer survivors, including:

• Body Image
• Communicating with Your Partner
• Dating and New Relationships
• Emotional Aspects of Cancer
• Emotional Support
• Fear of Recurrence
• Finding a Counselor
• Finding Meaning
• Grief and Loss
• Hope
• Living with Uncertainty
• Sadness and Depression
• Setting Priorities
• Stress
• Telling Others You are a Survivor

Employment Discrimination

After treatment many survivors experience employment discrimination.Fortunately, federal laws offer cancer survivors protections from discriminatory practices such as firing or a denial of benefits after a cancer diagnosis. Learn about your employment rights as a cancer survivor. NCCS offers a publication entitled Working It Out: Your Employment Rights As A Cancer Survivor (PDF). If you have a specific problem, the Patient Advocate Foundation has case managers and attorneys who offer personalized help with employment issues.  Another organization, Fair Employment for Cancer Patients and Survivors (FECAP), offers advocacy assistance on employment issues.  In addition, many communities have organizations that offer counseling and guidance in regards to employment related issues.

Health Insurance

Access to adequate and affordable health insurancecan also be a challenge for cancer survivors. Since state laws regulate many of the issues related to health insurance, it is important that you seek out and familiarize yourself with local organizations that can provide counseling and guidance about health insurance. NCCS offers a publication for survivors entitled, What Cancer Survivors Need to Know About Health Insurance (PDF). If you have a specific problem, the Patient Advocate Foundation has case managers and attorneys who offer personalized help with insurance issues. Many communities also have organizations that offer help in navigating the field of health insurance.

Support

Many survivors find comfort in communicating with other survivors. 

• The Association of Cancer Online Resources (ACOR) offers access to mailing lists that provide support, information, and community to everyone affected by cancer and related disorders. ACOR’s listerv categories include Disease Specific, Side Effects/Survivorship, Caregivers & Family Issues, Language Specific, Clinical Trials, End of Life/Hospice, Psychosocial and Faith Support, Disease Specific (Non Cancer), Professional, and Other.  ACOR also has the Long-Term Survivor’s listserv, which is specifically for survivors to address issues they may be dealing with. 

• The American Cancer Society’s Cancer Survivors Network is a community where cancer survivors, families, and friends can create and share personal web sites and find support from others.

• The Planet Cancer Web site provides a unique voice for young adults who have been affected by cancer: fresh and irreverent, but always honest. The site offers information, connections, entertainment and support. The heart of the site is the Forum, a thriving online community where users find and communicate with other young adults around the world about what's on their minds – from death or fertility issues to dumb things people say.

• The Ulman Cancer Fund for Young Adults offers support groups and networking for young adult survivors. 

• Mycancerplace.com is a Web site is a social networking site for cancer survivors. 

In addition to online groups, many organizations offer formal support groups.

• The Wellness Community offers professionally led support groups, educational workshops, nutrition and exercise programs, and mind/body classes to teach people affected by cancer vital skills that enable them to regain control, reduce isolation, and restore hope regardless of the stage of their disease. 
• Gilda’s Club provides meeting places where men, women and children living with cancer and their families and friends join with others to build emotional and social support as a supplement to medical care.  Free of charge and nonprofit, Gilda's Club offers support and networking groups, lectures, workshops and social events in a nonresidential, homelike setting.
• CancerCare offers counseling, education, financial assistance, and practical help by trained oncology social workers, completely free of charge.

Many local hospitals also offer support services that you may find useful- ask your nurse or social worker about local programs and groups.

Take Action

You don’t have to be an activist to be a good advocate for yourself and for others. At NCCS we believe that the more educated you become about survivorship issues, the more empowered you will feel, and you may one day write a letter, pay a visit, or make a phone call to your local and national elected officials to let them know your concerns about these issues. One way to make sure your voice is heard is to join NCCS’s grassroots legislative network, Cancer Advocacy Now!TM.  As a Cancer Advocacy Now! member, you can learn about the actions we are taking to change the way our nation researches, regulates, finances and delivers cancer care. Remember, you can make a difference both for yourself and for others. 

Cancer experiences often inspire survivors to give back to the community. For some this occurs by reaching out to other survivors. Imerman Angels is a cancer support organization that connects an individual fighting cancer today (a Fighter) with an individual who has fought and beaten cancer in the past (a Survivor). They set up 1-on-1 relationships to give a Fighter the chance to ask personal questions and receive support and encouragement from someone who is uniquely familiar with the situation.  Likewise, the R.A. Bloch Cancer Foundation has a program that matches newly diagnosed survivors with others who have completed treatment for a similar diagnosis.

Other survivors prefer to tell their stories to inspire others.  Share your experience with others through NCCS’s Survivor Profiles Program. 

Resources

Cancer Survival Toolbox®
To learn more about survivorship issues and challenges following treatment—such as physical effects, sexuality and fertility, family relationships, financial planning, health directives and living with hope—you can listen to module 10 of NCCS’s Cancer Survival Toolbox®, Living Beyond Cancer.

The Cancer Survival Toolbox is a free, self-learning audio CD program written and reviewed by cancer survivors for cancer survivors to help you develop skills to meet and understand the challenges of your illness. In addition to listening to the program online or downloading it from iTunes, you can order a free copy in English, Spanish or Chinese (transcript only) by calling 1.877.TOOLS.4.U.

Institutes of Medicine’s Report
From Cancer Patient to Cancer Survivor: Lost in Transition
In November 2005 the Institute of Medicine of the National Academies released a report on adult cancer survivorship. The report examines some of the long-term medical and social consequences of cancer treatment and survival; assesses the quality care provided to those living with, through and beyond cancer and provides policy recommendations to improve the care of cancer survivors. To learn more about the report, visit www.iom.edu.

National Cancer Institute’s Facing Forward Series:
Life After Cancer Treatment
The information in this document is designed mainly for cancer survivors who have recently completed their cancer treatment, but you may find the information helpful even if you were treated a long time ago. The purpose of this document is to give cancer survivors and their loved ones a better idea of what to expect during the first few months after treatment ends. To read this publication online, visit http://www.cancer.gov/cancerinfo/life-after-treatment.

President’s Cancer Panel Report
Living Beyond Cancer: Finding a New Balance
This report, together with a companion volume, Living Beyond Cancer: A European Dialogue, presents the Panel’s findings and recommended action steps to help alleviate the severe burdens experienced by cancer survivors and their families.  To view the report, visit http://deainfo.nci.nih.gov/advisory/pcp/pcp03-04rpt/Survivorship.pdf.