CureSearch
www.curesearch.org

This website provides information on aftereffects of cancer treatment for survivors of childhood and adolescent cancers. Even though the site is written about children and adolescents, adults may find some of the information useful in understanding the possible aftereffects of cancer. Information for caregivers is also included. The website provides guidelines for post-treatment screenings, explains possible aftereffects caused by cancer treatment and lists tips to manage aftereffect symptoms.

Eldercare Locator: Connecting  You to Community Services
www.eldercare.gov

The Eldercare Locator is a free national service of the U.S. Administration on Aging of the U.S. Department of Health and Human Services.  It provides a connection to resources that can help seniors live independently in their communities. The website lists phone numbers for state and local Area Agencies on Aging that serve older adults and their caregivers. People of all ages can use this resource to find in-home care.

Job Accommodation Network
www.jan.wvu.edu

The Job Accommodation Network Web site has 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.

Life and Health Insurance Foundation for Education
www.life-line.org 

The Life and Health Insurance Foundation for Education (LIFE) is a nonprofit organization dedicated to helping consumers make important insurance decisions to safeguard their families’ financial futures.

U.S. Institutes of Health - National Cancer Institute (NCI)
www.cancer.gov

The National Cancer Institute’s website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications. Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using this Web site and can tell you about NCI's printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.

VNAA is the national association of nonprofit, community-based visiting nurse agencies. Visiting nurses provide professional health care to individuals in their homes as they recover from illness or injury. This site provides fact sheets on choosing a home health care agency and types of home health care services. Also included is a search tool for finding a visiting nurse agency in your area.

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Aftereffects of Cancer Treatment

Aftereffects are physical, emotional and practical changes that happen after cancer treatment has been completed. Knowing what some of the common aftereffects are and why they happen can help you prepare for life after treatment.

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Aftereffects of Cancer Treatment: Detailed Information

A new chapter begins in the life of survivors the day that cancer treatment ends. Some survivors may leave cancer behind and continue life with few or no problems. Others may enter an unexpected new phase of the experience with cancer. This phase does not focus on battling cancer itself. Instead, the new challenge may be about identifying, understanding and living with unexpected aftereffects of cancer or treatment.

What are aftereffects?

Aftereffects can be described as long-term or late effects of cancer and treatment. Aftereffects can range from very mild to serious. They may vary from one survivor to the next. Doctors cannot always predict if any will occur or how long-lasting they will be. Treatment can help you manage aftereffect symptoms so you can live a full and happy life.

• Long-term effects develop during treatment and are lingering or chronic (do not go away). They continue after treatments are over. Many long-term effects improve or resolve with time such as anemia, fatigue or anxiety (feeling worried). Some survivors may experience long-term effects that are permanent such as limb loss, weakness or nerve damage.

• Late effects are delayed and can surface months to years after treatment ends. Generally, the earlier these problems are identified, the easier they are to treat. Some late effects are long-lasting or permanent such as certain types of heart disease or lung disease, lymphedema (swelling in a limb due to blockage of the lymph system), osteoporosis, depression and second cancers.

Examples of aftereffects include:

• Physical: Fatigue, scars or loss of limbs
• Emotional: Anxiety or depression
• Practical: Challenges with employment or getting health insurance

Why have some survivors never heard of the aftereffects of cancer treatment?

Not all cancer survivors will experience aftereffects. Learning about them may be uncomfortable. However, when you know what the possible effects are, you know what to watch for. You can also have more confidence in reporting symptoms to your health care team right away. Early medical attention can minimize problems associated with aftereffects.

Not all health care professionals talk to survivors about what to expect after treatment ends. The term aftereffects may be new to you. Although this area is now being researched, much less is still known about this than is known about side effects that can occur during treatment.

If you do not know what to look for or expect, symptoms of aftereffects can be very confusing and even frightening. You are not alone if you feel this way. Emotional and physical symptoms may be more challenging if they are not expected or understood.

If you have unusual or unexpected symptoms after cancer treatment is done, report them to your health care team so that a proper evaluation can be done. The symptoms may or may not be related to cancer or treatment. Something is causing these symptoms, and you deserve help understanding and managing these symptoms. They might be easily treatable.

How are aftereffects related to cancer treatments?

The most common treatments for cancer are surgery, radiation and chemotherapy. Each of these may be given alone or in combination with other treatments. These anticancer therapies may result in a cure, remission, disease control without remission, or symptom management (palliation). Much depends on the specific type and stage of cancer.

• Possible Aftereffects of Surgery

Surgical cancer treatment means removing cancerous tissue from the body. Surgery may be used to confirm the presence of cancer cells by taking a sample of tissue (biopsy). It is also used to remove as much of the tumor as possible. Sometimes surgery is used to reduce the size of a tumor (debulk the tumor) before using other therapies to eliminate the cancer. Surgery can also be a way to implant a device (port) for administering treatment medications.

The growth of a tumor can damage healthy tissue and kill normal cells. Damage can also occur when the healthy tissue around a tumor is surgically removed to be certain that all of the cancer cells are gone. Surgery can affect muscles, bones, nerves and organ systems, depending on what part of the body is operated on.

The risks of aftereffects of surgery have been reduced over the years. Less invasive surgery is now used for many types of cancer. This generally results in less scarring than what occurred in the past.

Possible aftereffects of surgery may include:

• Scarring at the incision site and internally
• Lymphedema or swelling of the arms or legs
• Problems with movement or activity
• Nutritional problems if part of the bowel is removed
• Cognitive problems such as memory loss, learning, concentration and processing information
• Changes in sexual function and fertility
• Pain that may be acute (sudden) long-term or chronic
• Emotional effects that may be related to feeling self-conscious about physical changes--even if the changes are not visible to others

Newer surgical methods generally help limit damage to normal tissues. Methods of reconstructive surgery can now help reduce noticeable physical changes. Even when a radical approach is needed, advances in surgical techniques and technology have dramatically reduced long-term effects.

• Possible Aftereffects of Chemotherapy

Chemotherapy medicines can stop cell growth and cell reproduction. This type of treatment may be given as an oral tablet, by injection or through the veins (an IV). Chemotherapy medicines circulate throughout the entire body by way of the bloodstream.

Chemotherapy medicines can damage healthy cells that normally divide quickly. They do not distinguish between cancerous cells and non-cancerous cells. This can cause effects throughout the body (systemic effects). The damage to healthy cells is the reason for the side effects.

Chemotherapy often interferes with the rapidly growing cells of the body like the gastrointestinal lining, hair, skin and nails. Survivors receiving these medicines may experience temporary side effects such as mouth sores, upset stomach (sometimes with vomiting), hair loss and skin rashes. Side effects usually improve or resolve as the non-cancer tissues repair themselves.

Aftereffects happen when organs are damaged by high doses of or repeated exposure to chemotherapy. How long the aftereffects last depends on many factors, including if (and when) damaged organs can repair themselves. Not all chemotherapy medicines cause the same aftereffects. Some aftereffects are due to a combination of chemotherapy with other treatments such as radiation.

The following are examples of possible aftereffects of chemotherapy:

• Fatigue
• Early or premature menopause
• Infertility
• Changes to the heart
• Reduced lung capacity with difficulty breathing
• Kidney and urinary problems
• Neuropathy or numbness, tingling and other sensations in certain areas of the body, especially the hands and feet
• Muscle weakness
• Cognitive problems such as memory loss or inability to concentrate
• Osteoporosis
• Changes in texture and appearance of hair and nails
• Secondary cancers

• Possible Aftereffects of Radiation Therapy

Radiation therapy involves the use of a special type of x-rays in a series of planned treatments.  During treatment, x-rays are directed at a tumor located in a specific area of the body. Aftereffects may occur because of permanent damage to normal cells or to structures of the body that are either right in or close to the area exposed to radiation (the field or radiation port).

Radiation therapy can be done either externally on the surface of the skin or internally (inside the body).The total dose of radiation that can be safely administered is now well known. Aftereffects that occur with certain radiation dose levels are also pretty well understood.

When external radiation is done, the area where the cancer is located must be clearly marked. This helps ensure that treatment is delivered directly to the tumor. Sometimes tiny dots are tattooed on the skin around the tumor to clearly mark its location.

If there are vital organs (such as the heart, lungs or liver) in the area of treatment, lead blocks are used to shield these organs from radiation. These blocks help minimize radiation damage to the normal tissues surrounding the cancer. They also ensure that the treatment is directed to the same location each time.

Radiation treatment is administered to a specific place in the body. Aftereffects occur only in the area of the body that was exposed to the radiation (known as local effects). Some radiation aftereffects may be similar to those caused by chemotherapy.

In some cases, X-rays in the intended field may scatter and expose surrounding tissues and organs to small doses of radiation. Depending on the position of a tumor, it could also be necessary to include healthy tissue and organs in the field in order to ensure complete treatment of the cancer.

Examples of aftereffects that are specific to radiation include:

• Cataracts, if treated near the eyes, cranial-spinal or if given Total Body Irradiation (TBI))
• Permanent hair loss if the scalp is radiated over certain dose levels
• Dental decay, tooth loss, receding gums if radiated near the mouth
• Loss of tears and the ability to produce saliva if lacrimal or salivary glands in the face are radiated or there has been TBI
• Problems with thyroid and adrenal glands if the neck is radiated
• Slowed or halted bone growth in children if bone is radiated
• Affects on the pituitary gland and multiple hormonal effects if the hypothalamic-pituitary region is radiated
• Decreased range of motion in the treated area
• Skin sensitivity to sun exposure in area of skin that is radiated
• Problems with the bowel system if the abdomen is radiated
• Secondary cancers in the areas radiated
• Infertility, if ovaries, testes, cranial-spinal area or TBI is directly radiated

• Possible emotional aftereffects

Some survivors continue to have strong emotions about the cancer experience long after treatment is done. Others may experience new emotions. Some feelings about the cancer experience can even surface months or years later.

Common emotions and concerns following cancer treatment may include:

• Anger
• Fear
• Sadness or depression
• Anxiety
• Uncertainty about the future
• Concerns about pain or fatigue
• Concerns about body image
• Concerns about relationships

Once you are physically able to return to your normal daily activities or work, you may find that you are no longer very interested in things that were once important to you. It may be difficult to concentrate. Some survivors worry a lot or have a general feeling of uneasiness or unhappiness. These types of emotions can affect communication with loved ones, friends and employers. In some cases, relationships may suffer. 

You may experience all, some, or no emotional aftereffects. If you have concerns, ask loved ones, friends or your health care team for help. Your concerns and feelings are important.

In some cases, it may be challenging to describe the feelings you are having after cancer treatment is done. You may think that you are only supposed to be grateful and happy. It may be tempting to try to ignore unpleasant emotions. However, if there are strong emotions, you may benefit from counseling or the support of others.

Many oncology programs now offer counseling support and support groups to help survivors continue to do well into the survivorship phase.  If yours does not, ask your doctor or social worker to help you find the support you need.

• Possible Practical Aftereffects

Following cancer and treatment, there may be problems with practical day-to-day life activities. Some challenges start during treatment and continue after treatment is finished. Others can surface months after treatment is completed, especially if physical and emotional aftereffects also develop.

Practical aftereffects may include:

• Difficulty working due to physical or emotional aftereffects
• Changes in relationships with loved ones, friends or co-workers
• Problems getting health or life insurance coverage
• Challenges communicating concerns to your health care team
• Financial stressors
• Employment discrimination

When do survivors need information on aftereffects?

• Recently diagnosed survivors: If you have recently been diagnosed, you can use information about aftereffects to make decisions about treatment options with your health care team. Find out what you can expect from different treatments. Ask how your life may change both during and after treatment.
  
  Knowing what to prepare for can help you choose the treatment that is right for you. Discuss concerns and fears with your health care team. Be honest and direct as you ask them to help you understand the possible changes to your life and what you can do to prepare for them. 
  
• Survivors who have completed treatment: After you have completed treatment, ask your doctor to provide a follow-up health care plan. It should include possible aftereffects and symptoms. Knowing what to look for can help you get treatment early and may help to reduce stress.
  
• Long-term survivors: Survivors who received cancer treatment many years ago may be living with undiagnosed aftereffects. The length of time they have been present may make them more challenging to manage. However, you can be helped with most aftereffects.

In the past, treatments for many types of cancer were more toxic. Some used to be given in much higher dosages, so more damage to healthy tissue may have occurred. If you were treated long ago, there may be symptoms that have not yet been evaluated or treated. This may have occurred because the risk of aftereffects was not yet understood or effective treatments may not have been available.

Keep a record of unexpected or unexplained symptoms, emotions and practical problems. Talk with your health care team and loved ones if you think it is possible that past cancer treatments may be affecting your physical and emotional health. In addition to physical symptoms, there can be long-term emotional and practical changes.

Understanding that cancer aftereffects are possible can help motivate you to:

• Choose healthy behaviors (such as, no smoking, exercise, good diet)
• Be aware of symptoms
• Seek a diagnosis if problems are noticed
• Get treatment as soon as possible

Are aftereffects affected by a survivor’s age at the time of the cancer diagnosis and treatment?

• Childhood, adolescent and young adult survivors: There is a growing body of research on the aftereffects experienced by survivors who were diagnosed and treated as children, adolescents or young adults (under age 40). The information that applies to adults may or may not apply to those who developed cancer and were treated when they were young. As you do your research, ask your health care team about these differences.
  
• Older survivors: Age-related changes can occur in older adults that affect normal functioning. Other health conditions can also affect recovery from cancer treatment and the risk of certain aftereffects such as heart disease. Keep a record of symptoms, known medical conditions and medications. Share this information with your health care team members.

There may be many reasons that survivors are not aware of possible aftereffects. During treatment survivors and their health care teams usually focus their attention on treating the cancer. Aftereffects are not the primary focus at that time. In some cases, aftereffects may not be discussed until symptoms show up after treatment.

At this time, there is still relatively little scientifically-proven information about aftereffects in adult cancer survivors. There have not been many guidelines for physicians about providing follow-up care until recently.

Primary care doctors, who do not specialize in oncology, may not be aware of the aftereffects of cancer treatments. Doctors may also not want to burden or frighten survivors with information about aftereffects that may or may not occur. In addition, communication problems can exist between health care team members and survivors.

Cancer treatment is an emotional experience, and survivors may not be ready or willing to talk about possible aftereffects during treatment. Survivors may not be aware that they need to keep track of and report symptoms after cancer treatment.

How can survivors work with their health care team to manage aftereffects?

Talking with health care team members is an important way for you to learn about possible aftereffects. This also helps to educate your team members about how you feel about important quality-of-life issues. Health care professionals often come to understand survivorship issues better by talking with survivors. 

Even though you may find that talking about aftereffects of cancer is challenging, knowing about them can help you make decisions that are right for your situation. Planning for the future may also help regain a sense of some control in life following a cancer diagnosis.

Health care team members may help you by:

• Providing information and resources for your specific type of cancer
• Describing risk factors and potential aftereffects
• Helping you to understand and manage aftereffects
• Telling you which doctors to see for routine follow-up visits or if certain symptoms or problems develop (such as an oncologist, gynecologist or general practitioner)
• Creating a follow-up health care plan for you to follow when your cancer treatment ends 

How can a survivor work with his or her health care team?

Even if you are no longer seeing your cancer health care team, there are things you can do to monitor your health, such as:

• Keeping a record of your symptoms and discussing them with your health care team
• Asking questions and doing research when you do not understand something related to your health and symptoms
• Getting a treatment plan for follow-up health care, including a schedule for screening tests and follow-up care
• Reading about aftereffects common for your type of cancer
• Sharing important information with loved ones and health care providers

Will all doctors know how to diagnose and treat aftereffects?

After completing cancer treatment, you will probably continue to see your oncologist for a while. Let him or her know right away if you notice any new physical or emotional symptoms. In some cases, you may need to make an appointment as soon as possible. Other times, you may be able to discuss and evaluate your symptoms at the next regularly scheduled health care appointment.

If you are no longer seeing an oncologist, talk to your primary care provider (PCP) about symptoms that you have. Keep in mind that not all doctors will know about cancer and aftereffects. You may need to ask to be referred to an oncologist for this matter--and preferably to one who treated you.

If you think that your doctor may not be taking your concerns about symptoms seriously, ask for a referral to a cancer specialist. You might have to be your own advocate for appropriate care after your cancer treatment is finished.

In most cases, it is helpful to have occasional follow-up visits with the oncologist who treated you. An oncologist will better understand cancer treatments and what aftereffects to look for.

Some survivors have difficulty with health insurance companies when they want to see their original oncologists for aftereffects symptoms. It may be helpful to talk with other survivors who have been through similar challenges. Ask about their experiences and how they managed. The process of getting good follow-up care after cancer is important but not always easy. You may have to be active and very determined to get the care you need.

Are there clinics that provide long-term health care follow up for survivors?

Many children and adolescent cancer survivors continue to have access to pediatric long-term follow-up clinics for a period following treatment. However, there are only a few long-term follow-up (survivorship) clinics for adult survivors. Several national cancer advocacy groups, including the Lance Armstrong Foundation, are working to bring more awareness to the aftereffects of treatment and the need for long-term follow-up care for cancer survivors of all ages.

When you are aware that aftereffects can occur, you are able to make choices that contribute to your health and quality of life. Always get medical help with symptoms as early as possible.

This document was produced in collaboration with:
Constance Engelking R.N., MS, OCN, and
Susan Leigh, R.N., Cancer Survivorship Consultant.

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Aftereffects of Cancer 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.

• Keep a written record of all of your symptoms and concerns.
  • After cancer treatment, watch for any changes that may occur in your physical and emotional health. 
  • Keep your health care team informed about any that affect your overall well-being and ability to do daily routines. 
  • Write this information down to help you organize your thoughts. This will ensure that you are able to report all of the important information, including symptoms, dates and what you did to get relief.

• Ask your health care team about aftereffects.

Write down important questions and take your list with you to your medical appointments.

Get answers to questions, such as:

• What, if any, aftereffects there will be on my day-to-day abilities as a result of treatment? 
• When might I notice aftereffects? 
• What early signs could tell me that something might not be right?
• How would I know if I need to see a doctor?
• What doctor should I call for which signs and symptoms or problems?
• What specific abilities or functions might I expect to lose?
• Could I expect to regain any lost ability or function? If so, when?
• When can I resume sexual relations? 
• When will it be possible for me to have a child? Should I meet with a fertility specialist?
• What are my options for treating ongoing symptoms or problems?
• Can you refer me to quality support services to help me with recovery (such as physical therapy or counseling services)?
• Will I need personal assistance at home? If so, what type and for how long?
• Will I need special medical equipment and supplies?
• How often should I have follow-up visits with you and other health care professionals? 
• What kind of screening tests should I have and how often?

Use community resources to help you manage and understand aftereffects.

If your life changes because of the aftereffects of cancer, community resources may be able to help you handle these changes.

These resources can help you

• Learn more about cancer treatments and possible aftereffects
• Find professional counseling resources to help you understand your symptoms and locate helpful community resources
• Join a support group to help you understand your experiences by learning from others
• Understand ways to handle employment, health insurance and life insurance problems that result from aftereffects of cancer treatment
• Locate in-home health care services to help you with challenging physical aftereffects

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Aftereffects of Cancer Treatment: Additional Resources

LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.

American Cancer Society (ACS)
www.cancer.org

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.

American Society for Therapeutic Radiology and Oncology (ASTRO)
www.rtanswers.org

It is estimated that nearly two-thirds of all cancer patients will receive radiation therapy during the course of their treatment. To help you and your family better understand how radiation therapy works and what to expect, the radiation oncology members of the American Society for Radiation Oncology (ASTRO), created this site to explain how radiation therapy can be safely and effectively used to treat cancer.

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

The Cancer Legal Resource Center (CLRC) provides information and resources on cancer-related legal issues to survivors, their families, friends, employers, health care professionals, and others coping with cancer.  The CLRC offers information on a broad range of cancer-related legal issues, including health insurance, employment, government benefits, estate planning, advanced health care directives, family law and consumer assistance.  Through a national toll-free Telephone Assistance Line (866-THE-CLRC), callers can receive information about relevant laws and resources for their particular situation.  The CLRC volunteer panel of attorneys and other professionals 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.

Chemocare.com
www.chemocare.com

Chemocare.com provides many types of information on the aftereffects of specific chemotherapy drugs as well as how to manage these effects. This website allows you to search by the chemical name of the drug, brand name of the drug, or the acronym that is most commonly used for the drug. Information includes long-term drug effects on the body, suggestions on when to contact your health care provider and self-care tips. Information on the site is also available in Spanish.