We consider a cancer survivor to be any person who has completed active therapy and is in remission. Some of us in the Cancer Survivors Project are more than 30 years past treatment, while others are fewer years from treatment. We all have had a different diagnosis and prognosis and therefore we believe that if you feel that you are a long-term survivor then indeed you are. This site differs from most websites dedicated to cancer survivors as it is intended for those who have completed treatment.

Recently published statistics say that one out of every 450 individuals in the U.S. is a cancer survivor. Many of the members of Cancer Survivors Project had never met or talked with another long-term survivor before joining the ACOR LT-SURVIVORS list. This e-mail discussion group has over 430 members and allows for active and ongoing discussion about issues of vital importance to long-term survivors. ACOR hosts many other lists, so you can also check these email discussion groups for your specific cancer.

The long-term survivors list can be found at www.acor.org Click on "Mailing Lists", then "Survivorship Issues", and finally "LT-SURVIVORS". When you join, you may also read through the message archives that will give you a feeling for what the group is all about and how it can help you. Also, check the e-mail addresses and biographies listed on this site for more information.

Our definition of late effects is complications, disabilities, or adverse outcomes that are persistent and are the result of the disease process, the treatment, or both. They can be clinically obvious and consist of functional or cosmetic disturbances that interfere with activities of daily living, such as amputation or severe cognitive impairment. Others are subtle and not always apparent, such as asymmetry of the trunk or scoliosis, and some are only found when specifically screened or tested, such as infertility, hypothyroidism, or mal-absorption †.

As many as two-thirds of survivors will experience a late effect of chemotherapy or radiation, physical or psychosocial, that persists or develops beyond five years from the diagnosis of the cancer. Survivors frequently have more than one late effect, with perhaps as many as a quarter of survivors experiencing one that is severe or life threatening ‡.

† "Pediatric Cancer Survivors: Past History and Future Challenges," Current Problems in Cancer, Vol. 27, No. 3, May/June 2003, p. 177.

‡ "Longitudinal Risk-Based Health Care for Adult Survivors of Childhood Cancer," Current Problems in Cancer, Vol. 27, No. 3, May/June 2003, p. 143.

It can take many years for some serious late effects to show up. For example, symptoms of cardiac disease may not appear until 7 to 39 years after mediastinal radiation or following treatment with cardiotoxic chemotherapy drugs. You do not want to wait until a situation has progressed, but instead be proactive to reduce your risk and minimize the progression of disease.

Survivors need to be in control of their own health and well-being. It is very important because of the complexity of health issues for survivors to be active participants in their own care. Primary care providers are not trained in caring for long-term survivors. There are a number of resources you can bring to your doctor - see the Reading List.

Check our website's Provider List for a list of long-term follow up clinics. Some follow-up clinics do not accept survivors who were diagnosed past a specific age or who are currently of a certain age. However, if you do not fit the age criteria for the clinic, it is important to ask the clinic contact if they can make a referral to someone who is at least knowledgeable about late effects. Even if a pediatric clinic cannot see an adult survivor, they may be able to offer a place to start your search.

See the Guidelines section of this website. Not all long-term survivors will experience late effects. Late effects depend on a number of factors, the individual, the type of treatment they received, the dosage, etc. It is important to understand your risks and to seek the proper ongoing medical care.

It is critical to have your medical records and know exactly which treatments you received, what the doses were and the dates of these treatments. You can order your medical records from medical records department at the institution that treated you. If the institution that treated you for your cancer does not have any old records from years ago, you can try to contact the oncologist who treated you or the office of his/her practice. It is also important to keep copies of your current medical records.

    Read more about gaining access to your medical records

Because cancer treatments impact many parts of the body, late effects can take many forms. There are a number of good resources highlighted in our Reading List. For example, Nancy Keene's book, "Childhood Cancer Survivors" can be an excellent source of information, not only for survivors of childhood cancer, but also for survivors of adult cancers. You may also contact us or join the ACOR LT-SURVIVORS listserv (www.acor.org). We are not medically trained, but often one or many of us will have similar experiences and may be able to make suggestions or direct you to resources.

This will vary depending on the type of cancer you had and the type of treatments. Many, if not most, cancer survivors are not getting adequate follow-up care after treatments. For some, late effects begin showing up within a few years after treatment while others do not see late effects for many years. Since two-thirds of all survivors will experience some late effects, knowledgeable care is essential. The IOM notes, "in recognition of the toll its late effects have on health, cancer is increasingly being viewed as a chronic disease."† As with any chronic disease, follow-up provided by a knowledgeable provider or team of providers is key to good outcomes. Finding adequate providers is covered on this website's Provider List. Also provided is a link to guidelines for ongoing preventive care.

† Institute of Medicine, Maria Hewitt, et al, eds, "Childhood Cancer Survivorship," p. 55-37 Institute of Medicine, Maria Hewitt, et al, eds, "Childhood Cancer Survivorship," p. 55-37

Health care professionals, especially those outside of major medical centers, usually have not had much experience with long-term survivors and so are often uninformed about late effects. If you live within a reasonable distance of a follow-up clinic and your insurance covers it, it is advisable to have your care coordinated through these providers. Some of us have been working with our doctors to educate them and have found them to be interested, receptive and supportive. When a specialist in long-term effects is not an option, you might want to take information to your primary care provider and develop a good prevention plan, and if necessary, a treatment plan based on the information that does exist. See our Guidelines section and Reading List for information that would suit this purpose.

We would recommend that you waste no time finding another doctor. Finding a good doctor may be challenging. A good place to start your search would be at the nearest follow-up clinic. You can find a list of follow-up clinics on our website's Provider List. We recommend that you use the term "I saw it on the Internet" cautiously when speaking with doctors, as this may elicit a negative response. The information provided on this site, -- for example the Late Effects Screening Guidelines -- comes from credible sources. Make sure your doctor understands that, although you may have found the information online, it comes from experts in the field.

When interviewing prospective doctors, be prepared. You need to decide for yourself what kind of relationship you want with your doctor. Some people prefer that a doctor be authoritative because that makes them feel secure. Others want a sense of partnership and the ability to participate in decisions. Also, you may want to consider how much weight to give a sensitive bedside manner versus technical competence. Following is a list of relevant questions to ask the doctor:

At the present time, individuals in the U.S.A. obtain health insurance in the following ways:

Employee health plans traditionally offer the easiest route for cancer survivors to obtain insurance because they are usually group plans offering comprehensive coverage, and do not require health screening for eligibility. However, in the USA employers are not required to offer their employees health insurance coverage. Currently, fewer employers are offering any coverage at all, and with greater frequency they are passing on the ever-increasing costs to employees, often making such plans unaffordable. Each employer and/or each plan may have different rules regarding eligibility of dependents for coverage. Most include children and the spouse of the employee; some may include domestic partners as well. Unions, professional groups and membership organizations (e.g. alumni and business associations, etc.) may also offer group health insurance plans to qualified members. Individual plans are allowed to screen applicants for risk factors and pre-existing conditions, and may either exclude cancer survivors or be so costly as to be unaffordable. While state high-risk pools may be an option for some, the cost of premiums may be out of reach. More information about high-risk pools can be found at the Health Insurance Resource Center.

Obviously the options are much more limited for survivors who are unemployed, self-employed, or who do not have a spouse with group insurance. Survivors on Social Security Disability Insurance (SSDI) become eligible for Medicare after 2 years. Others, particularly those with low income and few assets, should look into applying for Medicaid and any state assistance programs available. All states offer some form of public coverage for children under the State Children's Health Insurance Program (S-CHIP), which is also known by special names in each state, and a few states may offer some programs for adults. Veterans should seek assistance to determine if their cancer diagnosis and/or other health problems may be deemed to be service-connected, even if this was not determined at the time of separation from service. The Veterans Administration is currently restricting services based on service-connection and income. Nevertheless it is an option to be explored by those potentially eligible. This may be especially important for combat veterans.

If you and/or your spouse under whose group plan you are covered leave the job, you may be eligible to continue the coverage at your own expense under the provisions of the Comprehensive Omnibus Budget Reconciliation Act (COBRA). Former group plan enrollees have up to 60 days to elect to continue coverage under COBRA, and the former employer cannot charge more than 102% of the actual cost of the premium. This is different than the amount that may be charged to employees, which is often subsidized as an employee benefit. It is possible for a dependent, but not the employee him/herself to elect the COBRA continuation, and there are also certain rights extended to divorced dependents. In most cases, it is best to accept COBRA because if you change your mind later you will NOT have a second chance. If you accept, you can always terminate coverage as soon as your new health insurance becomes effective, thereby avoiding any gaps in coverage. While the cost of coverage under COBRA may be quite high, it is an important benefit because it allows a survivor to maintain status as part of a group plan and hence be excluded from any restrictions on preexisting conditions. It also can allow an individual the opportunity to transfer to another group plan in the future while maintaining the transferability of the coverage for the preexisting condition. Anyone electing COBRA, and paying the premiums, is guaranteed coverage for up to 18 months, and up to 36 months in the case of being qualified as disabled. Limited extensions are also available for certain qualified dependents under such a plan. If you become temporarily unable to keep up with COBRA payments while unemployed, and are incurring medical expenses, do not hesitate to contact your treatment center's financial department for help. In some states there may be help available under the center's charitable care program, and they much prefer to help with COBRA payments upfront than collections and bad debt later. Information about COBRA can be found at the website for US Department of Labor Employee Benefits Security Administration.

In general, cancer survivors may be considered to belong to the
category of protected classes that is covered by laws banning discrimination in the workplace against those with disabilities. There are different issues for those returning to a job after treatment and for those seeking new employment. The scenario can become complicated in the latter situation, especially in today's tight job market, as job seekers may not wish to disclose the need for special disability accommodations during the initial interview process. But employers cannot be required to offer accommodations unless they are aware of the employee's need for them.

Employers cannot question interviewees about their medical history and are expected to make reasonable accommodations so that employees can carry out job functions. Workers with disabilities must be able to meet all pertinent job requirements in order to be hired. There are many fine points to the laws, and interpretations have varied in different cases in different states.

The pertinent laws are:

I) The American Disabilities Act (ADA) of 1990, Title I, which prohibits private employers, state and local governments, employment agencies and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, and other terms, conditions, and privileges of employment. The ADA covers employers with 15 or more employees, including state and local, but NOT federal governments. It also applies to employment agencies and to labor organizations. There are also procedures at local, state, and federal levels for pursuing legal actions to attempt to resolve job discrimination related to disability status.

II.) The Rehabilitation Act of 1973 governs certain aspects of educational and vocational training services that may be applicable to cancer survivors, including the promotion of employment opportunities for disabled people.

III) The Family and Medical Leave Act (FMLA). The provisions of FMLA apply to cancer survivors as well as those in active treatment. Workers and family members covered by the FMLA also have the same rights to time off for medical care and work schedule adjustments.

The following organizations have useful websites and/or publications:

National Coalition for Cancer Survivorship (NCCS)
"What Cancer Survivors Need to Know About Health Insurance and Working It Out -Your Employment Rights as a Cancer Survivor"

Institute for Labor Relations, Cornell University
"Your Employees and Cancer: Working Together"

National Partnership for Women & Families
"What the Health Insurance Reform Law Means for Women & Families" and "Guide to the Family & Medical Leave Act"

CancerCare
'Employment: Discrimination in the Workplace'

Social Security Administration
"Working while Disabled: How We Can Help".
Electronic & print publications

American Cancer Society
"Cancer - Your Job, Insurance and the Law"

Cancer and Careers
"Working Women with Cancer"

U.S. Department of Labor
Job Accommodation Network

Cancer survivors are protected by laws meant to prohibit discrimination against individuals with disabilities or special needs in the education system. Two sets of laws are relevant: those pertaining to education and those pertaining to civil rights. Bear in mind that not all cancer survivors have conditions that affect the learning process; but some do, especially survivors of childhood cancer. Students without special learning needs but who have missed school due to a severe illness also are entitled to certain accommodations and help. The civil rights protection extends to all education settings, including colleges and universities, and vocational training programs, and offers some employment-related guidance as well.

The relevant education laws are:

Individuals With Disabilities Education Act
Amendments of 1997 ( IDEA) for birth-21 education

No Child Left Behind Act of 2002, (NCLB) for K-12 education

The relevant civil rights law is:

Section 504 of the Rehabilitation Act of 1973

Individual schools and school districts vary greatly in their ability and/or willingness to help students who are cancer survivors receive the maximum personal benefit from education services. It is really important for families and students to learn about their rights and types of assistance available.

There are a number of excellent resources on these topics, including:

The Parent Training and Information Center (PTIC). The PTIC in each state serves as the gateway to developmental and educational services for children form birth to age 21. Most offer parent advocacy training and support services as well.

PACER Center in Minnesota runs the national Parent Advocacy Coalition for Educational Rights, serving children ages Birth to 21.

Specialized Training of Military Parents (STOMP) in Washington State is the national PTIC for military families with a member with special educational and/or medical needs.

Wrightslaw is an information and advocacy website covering a wide range of special education, legal, and policy topics, and publishes materials on these topics.

Fatigue after cancer is not unusual. Many of us have fatigue even 30 and 40 years after treatment. However, it is important to consider the underlying reasons for fatigue. These may be very difficult to determine, but it is important to work closely with your physician to try to diagnose what may be ailing you. Successful diagnosis and treatment of certain conditions may alleviate your fatigue. For example, consider these four reasons for fatigue that are treatable and that cancer survivors sometimes face:

Depression: Fatigue can be a symptom of depression. According to the IOM, "Cancer may have psychological, social and spiritual or existential effects secondary to worry about aspects of survivorship, including the risk of relapses, dying, more treatments, potential problems with sexuality and fertility, body image, school and work performance, and social and family relationships."† Many survivors, even those functioning well in society, may have problems with depression that require intervention. A psychologist, especially one knowledgeable about the impact of cancer in someone's life, and in some cases psychotropic medication can help improve functioning.

Hypothyroidism: A common delayed effect of radiation therapy for Hodgkin's disease, brain tumors, and ALL is thyroid dysfunction. Many cancer survivors have a thyroid that doesn't work adequately.

Others have thyroids that do not work at all or develop problems requiring the surgical removal of the thyroid. In these cases, synthetic thyroid hormone taken in the appropriate dose can alleviate problematic symptoms like fatigue.

In an annual physical exam, one measure of thyroid function is usually calculated in routine blood tests. However, it may not be specific enough for people with cancer treatment in their medical history. If thyroid problems are suspected, an endocrinologist will be able to accurately diagnose and treat them.

Anemia: Survivors who have had abdominal radiation and/or abdominal/gastrointestinal surgery (or surgeries) may have problems absorbing nutrients. In these cases, the person may become very anemic and fatigued because iron eaten in a normal diet is not being absorbed. A simple blood test can determine iron deficiency anemia.

Treating anemia is usually begun with iron supplements in pill form. It's crucial to follow up and check iron levels with regular blood tests. Some people may need other forms of iron supplementation. Good nutrition is always important. There are many foods rich in iron, and you may some iron-rich foods that are easier for your digestive system to handle.

Heart problems: Certain chemotherapy (e.g., Anthracyclines) and chest/mantle radiation are tied to heart damage later in life. Being female and/or young at age of treatment, receiving a higher rate of administration or cumulative dose, and concurrent treatment with chest (mantle) radiation are independent risk factors that contribute to the development of heart abnormalities. Early identification and aggressive management of heart dysfunction can reduce fatigue and improve quality of life.

† Institute of Medicine, Maria Hewitt, et al, eds, "Childhood Cancer Survivorship," p.63.

Cancer treatments are designed to attack cancer cells, but other cells are affected as well. Those of us who are long-term survivors know that our bodies struggle with the affects of these treatments long after they are over. If healthy cells need a steady supply of nutrients in order to keep them functioning properly, then damaged cells need them more so, and in plentiful supply. An excellent diet is a start, but few people are able - or willing - to eat what would be necessary to provide the therapeutic supply of nutrients needed. Therefore, it is worth the time and effort to learn what the needs of your body may be, and find whole-food supplements to provide what your diet alone cannot. Whole-food supplements would be safer then synthetic supplements, which would hold a greater risk of adversely interacting with any medications you may be taking or any residues of your cancer treatments themselves. Supplements are not a cure-all, but the right supplements can help alleviate some symptoms and sometimes relieve adverse effects of treatments. The safest way to find well-made supplements is to find people who have found brands that have served them well. This is one area where searching the Internet will mostly yield questionable products and unsubstantiated hype. Nutritional supplements are currently unregulated, so do your research carefully.