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Aftereffects of Cancer TreatmentAftereffects 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.
Aftereffects of Cancer Treatment: Detailed InformationWhat will survivors learn in this document? This document provides an introduction to understanding aftereffects of cancer and cancer treatment and how they may affect your life. Because the aftereffects of different kinds of treatment are difficult to describe in one document, we do not provide extensive details on the specific physical, emotional and practical problems. However, the information in this document will help you be aware of the possibility of aftereffects so you can keep track of your symptoms and talk about them with your family and your health care team. All survivors can benefit from this information. However, it is written for adult survivors who have completed treatment either recently or in the last several years. Ideas on how survivors currently in treatment can use this information are given later in this document. What are aftereffects? Aftereffects can be described as long-term or late effects of cancer treatment. Long-term effects develop during treatment, are lingering or chronic (do not go away) and continue after treatments are over. Many long-term effects improve or resolve with time, such as anemia, fatigue and anxiety (feeling worried). Some long-term effects are permanent, such as limb loss, some types of limb weakness or nerve damage. Late effects are delayed and can surface months to years after treatment ends. Usually, 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. There are three different categories of aftereffects:
Aftereffects can range from very mild to very serious and will vary from one survivor to the next. Doctors cannot always predict which aftereffects, if any, will occur, or how serious or long-lasting they will be. You may not suffer any significant aftereffects at all. Aftereffects are sometimes an unavoidable and difficult part of being a cancer survivor. Your health care provider can not always predict what will happen. However, experiencing aftereffects does not mean that there is no hope in maintaining a high quality of life. Treatment can help you manage aftereffect symptoms and continue to live a full and happy life. Why have some survivors never heard of aftereffects of cancer treatment? The idea of aftereffects may be new to you. Much less is known about aftereffects than about side effects during treatment; however, ongoing research is actively exploring this area. Not all health care professionals talk to newly diagnosed survivors or those undergoing treatment about what to expect after treatment ends. When you don’t know what to look for, new symptoms can be very confusing and even frightening. Some survivors may think they are “going crazy” because they didn’t expect or don’t understand their physical or emotional symptoms. If you feel this way, you are not alone. The truth is that something is causing these symptoms, and the cause may or may not be related to your cancer history. You need to report your symptoms to your health care team and undergo proper evaluation. Your symptoms may be easily treatable, even if they are related to aftereffects of cancer treatment. Aftereffects of cancer are real, and if you are experiencing symptoms, you deserve help in learning how to understand and manage them. Cancer treatments and aftereffects The most common treatments today for treating cancer are surgery, radiation and chemotherapy. These treatments may be given as stand-alone treatments or, more commonly, in some combination with one another. These anticancer therapies may result in a cure, remission, disease control without remission or symptom management (palliation), depending on the particular type of cancer and the stage of disease. The purpose of the following short descriptions of cancer treatment is to explain in a very simple way why aftereffects can occur. Not all cancer survivors will experience these aftereffects. Learning about them may be scary. However, when you learn what the possible effects are, you can know what to expect and feel more confident in reporting any symptoms to your health care team right away. Medical attention can minimize problems associated with these aftereffects. Why does surgery cause aftereffects? Damage to healthy tissue can result from the growth of a tumor, which damages or kills normal cells as it grows. Damage may also occur when healthy tissue surrounding the tumor is removed during surgery to make sure that all of the cancer cells are removed. Surgery can damage muscles, bones, nerves and organ systems, depending on what part of the body is operated on. A few examples of possible aftereffects of surgery:
Although aftereffects can still occur, the risks of aftereffects of surgery have been reduced over the years. For many types of cancer, less invasive surgery is now used, which results in less scarring than years ago. Newer methods limit the damage to normal tissues, and reconstructive surgery now helps reduce noticeable physical changes from surgery. Even when a radical approach is needed, advances in surgical technique and technology have dramatically reduced the damage and resulting long-term effects associated with these procedures. Why does chemotherapy cause aftereffects? Chemotherapy medicines can kill or stop cell growth and cell reproduction. Chemotherapy medicines can be given as an oral tablet, by injection or through the vein (an IV). These medicines circulate throughout the entire body through the bloodstream. Because most of these medicines do not make a distinction between cancerous cells and non-cancerous cells, they can damage healthy cells that normally divide quickly. This can cause systemic effects (effects that happen throughout the body). This damage to healthy cells is the reason for side effects. Many of these medicines interfere with rapidly growing cells of the body like the gastrointestinal lining, hair, skin and nails. This is why survivors receiving these medicines experience temporary side effects such as mouth sores, upset stomach (sometimes with vomiting), hair loss and skin rashes. As the non-cancer tissues repair themselves, the side effects improve or resolve. 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 the damaged organs can repair themselves. Not all chemotherapy medicines cause the same aftereffects. Some aftereffects are related to specific medicines, and some happen as a result of the combination of chemotherapy with other treatments, such as radiation. Some examples of possible aftereffects of chemotherapy
Why does radiation therapy cause aftereffects? Radiation therapy is the use of x-rays in a series of planned treatments. The x-rays are directed at a tumor located in a specific area of the body using a variety of techniques. Radiation can be administered either externally (on the surface of the skin) or internally (inside the body), and in high or low doses. The total dose of radiation that can be safely administered is well known, and the types of aftereffects that occur with certain radiation dose levels are also fairly well known. Aftereffects occur because of permanent damage to normal cells or structures of the body that are either right in or close to the area being exposed to radiation (the “field” or “radiation port”). When external radiation is given, the area where the tumor is located must be clearly marked so that radiation 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 radiation field, lead blocks are used to shield these organs from radiation. These shields help minimize radiation damage to normal tissues surrounding the cancer, as well as ensure that treatment is directed to the same location each time. Some rays in the intended field may scatter and expose surrounding tissues and organs to small doses of radiation. Or, depending on the position of the tumor, it may be necessary to include some healthy tissue and organs in the field in order to ensure complete treatment of the cancer. In contrast to chemotherapy, which is systemic, radiation is local and causes aftereffects only in the area of the body that was exposed to the radiation (known as local effects). Some radiation aftereffects are similar to those caused by chemotherapy. However, some examples of aftereffects that are specific to radiation include:
After treatment, you may continue to have strong feelings regarding your illness and treatment, or you may experience new emotions. Feelings about the cancer experience may even surface months or years later. Some common emotions and concerns you may experience after treatment:
Sometimes you may not know how to describe the feelings you are having. If you think that you are supposed to be grateful and happy, you may try to ignore unpleasant emotions. Even though you may be physically able to return to your normal daily activities or work, you may find that you aren’t very interested or that you have trouble concentrating. You may worry all the time or just have a general feeling of uneasiness or unhappiness. These emotions can affect how you communicate with your family and friends, and those relationships may suffer. You may experience all, some or none of these emotional aftereffects. You may also have thoughts, feelings and reactions that are not mentioned. Asking for help from your family, health care team or mental health professionals can help you manage your emotions. Your concerns and feelings are important and deserve attention and appropriate treatment as soon as they are noticed. Seeking psychological and counseling support is a part of many oncology programs and continues well into survivorship. Your feelings are valid and to warrant proper evaluation and support. What are some practical aftereffects of treatment? You may have practical problems with every day life activities. Some problems may start during treatment and continue after treatment is finished. Other problems may surface months after treatment is completed, especially if physical and emotional aftereffects develop. Some practical areas where problems may surface:
These are just a few examples, but all areas of your life can be affected. When do survivors need information on aftereffects?
What information do childhood cancer survivors and older survivors need?
Why do some survivors know so little about aftereffects?
How can survivors work with their health care teams to manage aftereffects? Even though talking about aftereffects can be upsetting, you have a right to know what is happening or going to happen to your body. Knowing what to expect helps you to make decisions that are right for you, plan for the future and regain a sense of control over your life. Talking with health care team members is an important way for you to learn about possible aftereffects of specific treatments. This communication also helps to educate health care team members about important quality of life issues that can affect you. Much of what health care professionals know about survivorship topics comes directly from survivors themselves. Health care team members should help you in the following ways:
You can work with your health care team in the following ways:
Remember that even if you are no longer seeing your cancer health care team, you can discuss these issues with any health care professional. Will all doctors know how to diagnose and treat aftereffects? After you finish treatments, you will probably see your oncologist for a while to watch your health. If you notice any new physical or emotional symptoms, talk to your oncologist. Decide with your oncologist if you need to make an immediate appointment or if you can discuss and evaluate your symptoms at the next scheduled visit. In most cases, even if you are being followed by a primary care provider for your non-cancer medical needs, it is helpful to have occasional follow-up visits with the oncologist who treated you. Your oncologist will usually know the most about your treatment 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. Talking with other long-term survivors who have similar challenges can also be helpful and reassuring. By sharing information, you can learn from their experiences and find ways to manage your own challenges. The process of getting long-term follow-up care is not always easy. When your concerns are not acknowledged, you may be very frustrated. You will have to be active and determined in asking for the help you need. Are there long-term follow-up clinics for survivors? Many young survivors who were treated when they were children or adolescents continue to have access to pediatric long-term follow-up clinics. At this time, there are very few long-term follow-up clinics for adults. 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 adults. Managing Aftereffects Living with aftereffects of cancer treatment can be difficult. However, when you are aware that aftereffects can happen and seek help with symptoms early, you increase your chance for successful treatment and a better outcome. Understanding that cancer aftereffects are possible can help motivate you to:
Aftereffects of Cancer Treatment: SuggestionsKeep a written record of all of your symptoms and concerns. After treatment, be aware of the changes in your day-to-day physical and emotional health. Keep your health care team informed about changes that affect your overall well-being and ability to go about your daily routines. Telling your health care team about all of the physical and emotional symptoms you are experiencing is very important to getting the right health care. However, describing your symptoms and concerns can be difficult. Writing this information down before your health care team visit can help you organize your thoughts and ensure that you report important information. You can use the aLance Armstrong Foundation Health Journal to write down all of your physical and emotional symptoms and concerns. The Health Journal can be found at www.livestrong.org/cancersupport in the Download Worksheets tab. The Health Journal includes:
Questions you can ask your health care team about aftereffects. Below are questions that can help you communicate with your health care team about aftereffects that you are already experiencing or that may happen in the future. Write these questions down in your Live Strong Health Journal or take this list with your to your appointments.
Use community resources to help you manage and understand aftereffects. The aftereffects of cancer treatment can impact you and your family in many unexpected ways. When your life changes because of aftereffects, community resources can help you handle these changes. The Additional Resources document provides a list of specific resources you can contact for services and more information on aftereffects. These resources can help you
Aftereffects of Cancer Treatment: Additional ResourcesThe resources listed below provide more information and support services to help you with aftereffects. Please read the Detailed Information and Suggestions document for more information and questions to ask. Click a resource for more information:
LIVESTRONG SurvivorCare Program
LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed. The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply. National Cancer Institute (NCI)
Cancer.gov, the National Cancer Institute Web site, provides accurate, up-to-date information on many types of cancer and the challenges cancer can bring. You can also use the site to search for information by cancer type or topic, and you can access information about treatment-related issues. Information about financial and insurance matters is also included. You can learn how clinical trials work and search for a clinical trial in your area. This site has a detailed dictionary of cancer terms. Web site information and publications are available in Spanish. Cancer Legal Resource Center (CLRC)
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. Job Accommodation Network
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. American Cancer Society
The American Cancer Society Web site contains 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, or you can join online groups and message boards. Some information on the Web site is available in Spanish, Chinese, Korean and Vietnamese. Information specialists can answer questions 24 hours a day by phone or email. Life and Health Insurance Foundation for Education
This Web site provides information about many different types of insurance, including life, disability, and long-term care insurance. Tools for calculating your insurance needs and tips on finding an agent are included. The site also has a glossary of insurance terms. 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 Web site 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 on long-term drug effects on the body, suggestions on when to contact your healthcare provider and self-care tips are also included. American Society for Therapeutic Radiology and Oncology (ASTRO)
ASTRO's Web site has information for survivors who have had radiation treatment. There are several booklets on radiation therapy that discuss the different kinds of radiation and aftereffects of radiation therapy. These booklets can be viewed online, and free print versions can be ordered online. CureSearch
This Web site 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 aftereffects. Information for caregivers is also included. The Web site 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
The Eldercare Locator is a free national service of the U.S. Administration on Aging, U.S. Department of Health and Human Services. It provides a connection to resources that enable older persons to live independently in their communities. The Web site 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. Visiting Nurse Associations of America (VNAA)
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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