Cancer Survivorship after Treatment

Many survivors experience physical, emotional and day-to-day challenges after cancer treatment is done. Knowing how to plan for and get the best possible post-treatment follow-up care can greatly contribute to your quality of life.

Cancer Survivorship after Treatment: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources

Cancer is a disease that many people can and do survive. Best estimates are that there are currently about 12 million people living with cancer in the United States alone, and many millions more worldwide. Advances in screening and treatment methods now enable earlier detection and more successful cancer treatment options. Today, more people than ever are surviving longer and leading full lives during and after cancer treatment.

The day cancer treatment ends, a new chapter in life begins. While some survivors leave cancer behind and move forward with few problems, others might experience physical or emotional effects. Some of these effects may start during cancer treatment and continue long-term. Some aftereffects or late effects of treatment can appear months or even years later.

Cancer survivorship includes the physical, emotional, and day-to-day issues of the cancer journey. Survivorship begins at the time of diagnosis and continues during and after treatment. When treatment is completed, survivorship needs include follow-up health care and getting help with any emotional and physical late effects of cancer or treatment. A Survivorship Care Plan helps to ensure the best possible follow-up care and quality of life. This includes working with your doctor to plan and get recommendations for future cancer screening, prevention and healthy living choices.

This document focuses on cancer survivorship after treatment including:

• Late physical effects
• Late emotional effects
• Other survivorship issues
• Developing a Survivorship Care Plan

Late Physical Effects

Not all survivors experience long-term or late physical effects of cancer treatment. Your doctors cannot always predict if, or when, late effects will occur. In the past, treatments for many types of cancer were more severe than today. If you are a survivor who received treatment years ago, you may already be living with long-term or late effects.

Depending on the type of cancer and treatment, physical late effects that may occur can include:

• Fatigue
• Problems fighting infection
• Lymphedema or swelling of arms or legs
• Memory loss or trouble focusing thoughts
• Changes in sexual function or fertility
• Pain
• Nerve problems such as numbness and tingling
• Bone and joint problems
• Muscle weakness
• Secondary cancers
• Skin sensitivity to sun exposure

If you experience physical effects, they may be different than those of other survivors you know. Much depends on the type of cancer and the treatment received. Symptoms can range from very mild to serious. Some physical effects, such as anemia or fatigue, might improve or go away with time. Other physical effects may be permanent such as certain types of nerve damage.

Ask your doctor if there are late effects that could occur with your type of cancer or treatment. This information will help you, and those close to you, to know what to watch for. In most cases, the earlier late effects are identified, the easier they are to treat. If you do experience physical effects of cancer treatment, it does not mean that your health care team did anything wrong. In most cases, the treatment given was necessary, and the aftereffects could not have been avoided.

Late Emotional Effects

Survivors often experience a mix of emotional reactions after cancer treatment is completed. Some emotions feel positive such as a sense of gratitude and renewed wonder about life. You may feel good about personal strengths that were discovered during treatment. There may be deepened relationships with loved ones and friends. Sometimes there is a renewed commitment to get the most out of life and a desire to meet new goals.

Survivorship can also include confusing feelings that do not feel positive. Some survivors describe the period after cancer treatment as one of the most emotional times of their lives. You may find more time to think about things that you did not have time to consider during treatment. It can be a surprise to discover uncomfortable thoughts and unanswered questions.

Survivorship issues may include worry about the unknowns of the future. Some survivors have mixed feelings when they are no longer actively receiving cancer treatment. You could feel a loss of connection from the health care team members who guided and supported you through your cancer diagnosis and treatment.

Sometimes, loved ones, friends and health care team members are ready to celebrate the victory of beating cancer before you feel ready to do so. It might be hard for others to understand the emotional stress that completing cancer treatment can bring. This can feel like pressure to get on with your life, and it can be difficult to deal with these types of feelings if those close to you think you should be celebrating. Talking with others about how you are feeling can help them better understand your experience.

Acknowledging your concerns about the cancer experience can be a first step in finding ways to manage survivorship issues. You may find that it is helpful to discuss these issues with other survivors. The emotional impact of cancer and treatment is likely to lessen as other life events begin to take up more of your time after treatment. However, it is possible that certain dates or events cause you to again think more about the cancer experience. Talk with your doctor if strong emotions continue to affect your life such as anxiety or depression. You can ask for a referral to a licensed counselor or oncology social worker to get help finding ways to treat and deal with your concerns.

Other Survivorship Issues

Survivorship issues sometimes affect other areas of life after cancer treatment. Support services can help you deal with physical, emotional and day-to-day issues such as:

• Difficulty on the job or in school
• Changes in relationships with loved ones, friends or coworkers
• Loss of self-esteem
• Concerns about body image changes
• Problems getting health or life insurance coverage
• Stressors related to financial issues

You may experience changes in personal beliefs, priorities or values during the cancer journey. Sometimes survivors feel angry or question spiritual beliefs because of the experience of living with cancer and uncertainty. Consider talking with loved ones, friends, other cancer survivors or a member of your faith-based group to find ways to manage changes. Keep in mind that you can also ask your doctor for a referral to a health care professional, support group or nonprofit cancer organization for help. You do not have to deal with survivorship issues without support from others.

Every day there are increasing numbers of cancer survivors. Advances in medicine and health care technology have made this possible. Many survivors live full and healthy lives after cancer treatment is done. However, cancer can become a chronic (long-term) condition for some. Chronic conditions may include an increased risk for a recurrence of cancer or a high risk of developing a new type. There might also be concerns about long-term emotional issues, physical limitations or cognitive changes such as memory loss.

Developing a Survivorship Care Plan

Survivorship after treatment is an important phase of cancer care. The Institute of Medicine's (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that each cancer patient receive a "Survivorship Care Plan." This plan for wellness can help you to continue to receive the best health care for your situation.

The general recommendations of the IOM are that a Survivorship Care Plan include the following:

• Record of your medical history
• Summary of your cancer diagnosis and treatment
• Follow-up plan for health care

Survivors deserve quality health care for as long as it is needed. However, some primary care doctors and other health care providers who have not specialized in cancer care may not understand all that is needed after treatment is done.

When cancer treatment is done, work with your doctor to develop a Survivorship Care Plan. This is a plan for wellness that can help ensure that you continue to receive the best health care possible. It includes important information about your medical experiences to be shared with your current and future health care team members. Be sure to keep a copy of your plan, and to also give a copy to each of your doctors.

Work with your oncologist and primary care doctor to develop a Survivorship Care Plan that includes:

• Specific information about your cancer diagnosis and treatment
• Information about possible late effects and signs of a recurrence or new cancer
• A schedule for follow-up health care including screening tests
• Tips on cancer prevention and suggestions for maintaining a healthy lifestyle
• How to find quality health care and other support services

You and your health care team can take the following steps to create your Survivorship Care Plan:

Step 1: Create a record of your medical history.

A record of your medical history is helpful to loved ones and to health care providers. It should include all medical issues with dates, symptoms, treatments received and side effects. Include facts from as far back as possible.

Include the following information in your medical history:

• Types of vaccinations and immunizations you have had
• Information about ongoing health problems including dental issues
• List of the prescribed and over-the-counter medicines you take (dates taken, name of medication, dose and name of the prescribing doctor)
• Notes about side effects or reactions you had to medicines or treatments1
• History of pain problems including treatments and results
• Information about specific cancer treatments and side effects
• List of allergies and sensitivities
• List of past injuries and surgeries with treatments and results
• Information about diet and nutritional concerns
• Facts about your family's medical history including cancer, diabetes, heart conditions, stroke and other issues

Step 2: Get a Cancer Treatment Plan Summary from your health care team.

After your treatment is done, ask your oncologist to provide you with a written cancer treatment plan summary. This document should contain information that can be shared with your primary care physician as you return to general health care appointments. It will also help new or future health care providers.

A cancer treatment plan summary (done after you have completed all of your treatment) can help ensure that you get the best possible future health care. Ask your doctor to update your summary if there are new treatments.

To save time for your doctor, fill in what you can on a treatment summary form such as the one in the LIVESTRONG Planner and Journal. Take this form to the doctor and ask him or her to complete what you could not. Be certain that you, the oncologist and your primary care physician keep a copy of your cancer treatment summary. This can help you get the best care and support in the future.

Include the following information in your cancer treatment plan summary:

• Description of diagnostic tests, dates of treatments, and results
• Your specific cancer diagnosis including the type of cancer, date of diagnosis, where it occurred, stage, grade, hormonal status and markers
• History of your cancer treatments and hospital stays including dates, doses of medications and the agents that were used
• Information about your cancer treatment responses, reactions and side effects
• Other health care services that were provided such as physical therapy, psychosocial counseling and nutritional services
• Names and contact information for the health care team members who were involved in your cancer treatment
• Future cancer care recommendations including prevention methods and a schedule for ongoing screening tests
• Future cancer care provider recommendations for follow-up care including names, specialties and contact information

Step 3: Get a Health Care Follow-Up Plan.

When treatment is done, make certain that your doctor provides you with a health care follow-up plan. This plan tells you what you need to do to stay physically and emotionally healthy. Your follow-up plan needs to include the specific types of health care you will need in the near and distant future.

A health care follow-up plan should tell you:

• What needs to be done in terms of future health care
• When it needs to happen
• Where you can get help including referrals to providers

Include the following information in your health care follow-up plan:

• Possible late and long-term effects of treatment including symptoms and possible reactions
• Signs and symptoms of cancer recurrence and other types of cancers
• Information about social and emotional support including support groups and counseling resources
• Recommendations for healthy living including information about risks and prevention
• Recommended schedule for medical tests, cancer screening and specific types of exams
• Referrals to specific health care providers for follow-up care
• Contact information for nonprofit cancer services and other resources

Step 4: Get information from your health care team to handle your concerns.

Life after cancer treatment may be different. Your life might have changed in many ways. You may have developed a strong interest in making more changes in your life.

Talk with your doctor and other members of your health care team about specific areas of concern in your life.

You may have medical questions, relationship issues and day-to-day concerns. Your doctor or other members of your health care team can help you find answers. Talk with them as you work to develop your health care follow-up plan.

The following are examples of questions that you may have about life after cancer treatment:

• Ask your doctor questions about medical concerns such as:
  • Can the cancer come back?
  • Could a new type of cancer develop?
  • What are symptoms and signs of recurrence or new cancer?
  • What aftereffects of treatment are possible?
  • How can aftereffects be treated?
  • What can I do to stay healthy and prevent future health problems?
  • Will I need ongoing therapies such as physical therapy?
  • Will you provide a schedule for follow-up exams, screening and other medical tests?
  • Where can I find information about genetic testing and counseling?
  • What prescriptions and over-the-counter medications will I need?
  • Will you refer me to health care specialists for follow-up care?
  • What do you recommend about screening or testing for family members?

• Ask your doctor or nurse questions about relationship concerns such as:
  • Where can I find help with relationship problems?
  • Where can I find support groups or counseling services?
  • Will you give me a referral for sexuality or fertility concerns?
  • Where can I find help with parenting or caregiving concerns?

• Talk with your nurse or social worker about day-to-day concerns such as:
  • What types of changes could be made at work for my situation?
  • Where can I find help with legal and financial issues?
  • How can I find resources and information to help me with future insurance and health care benefits?

Step 5: Keep your health care team informed both now and in the future.

As you move forward with life after treatment, keep your health care team informed about concerns such as pain or symptoms of a new or recurring cancer. Ask your doctor to help you or refer you for assistance with physical, emotional and day-to-day challenges. Many nonprofit cancer organizations, government agencies and health care providers offer excellent resources and services to help with survivorship needs.

Contact your doctor if you have health concerns. Discuss symptoms that might be related to cancer. There could be a need to make an appointment to go back to your oncologist for further evaluation or health care.

Keep your health care team informed about problems you experience such as:

• Pain concerns
• Signs and symptoms of possible cancer (recurrence or new type)
• Information about medications, supplements or other treatments you are taking
• Emotional concerns such as depression or anxiety
• Physical concerns including fatigue, memory changes and sleep problems
• Relationship concerns

The LIVESTRONG Care Plan is a free online tool that was created to help you develop a personalized plan for post-treatment care. It can help you work with your oncologist and primary health care provider to address the medical, emotional and social challenges that may arise after cancer treatment is completed. By answering some questions related to your cancer treatment, you will receive information about your follow-up care. The information includes symptoms to watch for in the future and steps you can take to stay healthy. You can find the LIVESTRONG Care Plan at www.LIVESTRONGcareplan.org.

The LIVESTRONG Guidebook set provides information and worksheets that complement the LIVESTRONG Care Plan and help you keep track of important information related to your survivorship. Visit www.LIVESTRONG.org/guidebook to request a free copy of the Guidebook set.

This document was produced by the Lance Armstrong Foundation.

Works Cited:

Institute of Medicine and National Research Council of the National Academies. From Cancer Patient to Cancer Survivor: Lost in Transition. Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board. Editors: Maria Hewitt, Sheldon Greenfield and Ellen Stoval. Washington, D.C. 2006.

Lance Armstrong Foundation, LIVESTRONG Guidebook and Planner and Journal set. Austin, TX, 2009.

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Cancer Survivorship after Treatment: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.

Your Survivorship Care Plan should define specific information about past, present and future health care needs. It should also include recommendations for screening, disease prevention and healthy living. Good follow-up health care will help you avoid or deal with any late or long-term physical or emotional effects of cancer and treatment.

Your Survivorship Care Plan should include the following information about you:

• Medical history with dates, past health problems, diagnoses, treatments and results
• Cancer treatment summary with dates, information about cancer treatments, aftereffects and results
• Health care follow-up plan with recommendations and schedule for future exams, screenings and tests

Talk with your doctor about things you can do to maximize your health such as:

• Avoiding tobacco products and excessive alcohol use
• Being physically active and reducing stress
• Eating the right foods
• Maintaining a healthy weight
• Protecting skin and eyes from exposure to ultraviolet radiation such as from the sun and sunlamps
• Avoiding known risk factors such as asbestos and certain chemicals
• Getting regular medical and dental care

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Cancer Survivorship after Treatment: Additional Resources

The resources listed below provide more detailed information and support services to help you with cancer survivorship after treatment. Please read the Detailed Information and Suggestions document for more information and questions to ask.

LIVESTRONG Navigation Services
LIVESTRONG.org/Get-Help

Online: Complete an intake form through the LIVESTRONG website.
Phone: 1.855.220.7777 (English and Spanish)
Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about fertility risks and preservation options, treatment choices, health literacy and matching to clinical trials. Emotional support services, peer-to-peer matching and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG has partnered with several organizations including Imerman Angels, Navigate Cancer Foundation, Patient Advocate Foundation and EmergingMed.

LIVESTRONG Care Plan
www.LIVESTRONGcareplan.org

This free online tool was created to help you develop a personalized plan for post-treatment care. It can help you work with your oncologist and primary health care provider to address medical, emotional and social challenges that may arise after cancer treatment is completed. By answering some questions related to your cancer treatment, you will receive information about your follow-up care. This information includes symptoms to watch for in the future and steps you can take to stay healthy.

American Cancer Society (ACS)
www.cancer.org

Email: Submit questions in English or Spanish from the "Contact Us" page.
Phone: 1-800-227-2345
TTY for deaf and hard of hearing callers: 1-866-228-4327

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

Cancer Hope Network
www.cancerhopenetwork.com

Email: info@cancerhopenetwork.org
Phone: 1-877-467-3638
This number is answered Monday—Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours.

Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. They offer support by matching cancer patients or family members with trained volunteers who have already undergone and recovered from a similar cancer experience. You can submit your request by phone or by email. A volunteer will try to contact you within 24 hours.

Cancer Legal Resource Center (CLRC)
www.disabilityrightslegalcenter.org

Email: clc@lls.edu
Phone: 1-866-843-2572 or 213-736-1455
TTY for deaf and hard of hearing callers: 1-213-736-8310

The Cancer Legal Resource Center (CLRC) provides information about cancer-related legal issues to survivors, loved ones, friends, employers, health care professionals and others coping with cancer. CLRC information covers health insurance, employment, government benefits, estate planning, advanced health care directives, family law and consumer assistance. Through the CLRC national toll-free Telephone Assistance Line callers can receive information about laws and resources for their particular situation. The CLRC volunteer panel of attorneys and other professionals can provide more in-depth information and counsel to CLRC callers. All CLRC services are free and confidential. Services are available in both English and Spanish.

Cancer.Net
www.cancer.net

Email: contactus@Cancer.Net
Phone: 1-866-651-3038 or 561-483-1780

Cancer.Net brings the expertise and resources of the American Society of Clinical Oncology (ASCO), the voice of the world's cancer physicians, to people living with cancer and to those who care for and about them. All the information and content on Cancer.Net was developed and approved by the cancer doctors who are members of ASCO and has a database to help you find an oncologist. The site includes information on more than 125 types of cancer and cancer-related syndromes, clinical trials, side effects of treatment, coping methods, and help related to caregiving concerns. Cancer.Net also provides medical illustrations, questions to ask the doctor, and information in Spanish.

Job Accommodation Network
www.jan.wvu.edu

Email: jan@jan.wvu.edu
Phone: 1-800-526-7234
This number is TTY-equipped for deaf and hard of hearing callers. Calls are answered Monday-Friday, from 9:00 a.m. to 6:00 p.m. (EST). Voicemail is available after hours.

The Job Accommodation Network website offers tools to help you understand the types of workplace adjustments that may help you to continue working during and after cancer treatment. The American Disabilities Act (ADA) is described in detail. Examples of worksite modifications and self-employment information are also provided.

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