Living With and Beyond Cancer

Updated on 6/4/09

One of the first things a cancer diagnosis threatens is your overall enjoyment of life. Yet for many years, as doctors concentrated on treating the cancer as effectively as possible, a patient's quality of life often was the last thing considered. That is changing. With more than 11.1 million cancer survivors in the United States today, many researchers are grappling with the challenge of helping patients and survivors maintain or regain a sense of well-being.

Recent statistics show that one out of every six people over 65 is a cancer survivor and that 1.4 million of these cancer survivors were diagnosed more than 20 years ago. In 2001, there were 2.2 million breast cancer survivors, 1.6 million prostate cancer survivors, and 1 million colorectal cancer survivors. And the number of cancer survivors continues to increase, thanks in large part to earlier detection, improved treatments, the supportive care of family and friends, and the huge cohort of baby boomers now entering the cancer-prone years.

A large part of this group may live with cancer as a chronic disease, rather than an eventually fatal one. Many will move on to lead normal lives, reporting few if any side effects. Indeed, one important finding among researchers is that two thirds of cancer survivors report that cancer has not had a significant long-term impact on their lives.

According to the U.S. Centers for Disease Control and Prevention and the National Cancer Institute, 66.4 percent of adults whose cancer is diagnosed today can expect to be alive in five years. This figure is even more promising for children for whom the five-year survival rates—depending on the type of cancer—now range between 70 percent and 92 percent, with the 10-year survival rate at 75 percent.

Five-year survival rates vary according to the type of cancer and how early it is diagnosed. From 2000 to 2005, the following five-year survival rates held true:

• Female breast: 88.7 percent
• Colorectal: 64.4 percent
• Lung and bronchus: 15.2 percent
• Prostate: 98.9 percent
• Pancreas: 5.1 percent

Bear in mind as you read through this guide that five years is the benchmark figure for studies of survivorship of adult cancer patients. As those who have been treated for cancer live longer, information about longer-term survival will become more available.

Surviving cancer differs from dealing with many other health issues, in that recovery may not be the end of the cancer experience. For some, cancer becomes a chronic condition, requiring periodic treatments. Others may go into long-term remission. But even if it has been years since you were successfully treated, no one, not even your cancer doctor, can tell you for sure that your cancer will not recur. At some point, all cancer patients have to find a way to live with this frightening truth. Cancer treatments also can be very toxic, leaving you with unique health needs that require lifelong surveillance and evaluation. Finally, many cancer patients report that recovering from the social and emotional trauma of the disease can take longer than recuperating from some of the treatments.

This guide explores many of the challenges of surviving cancer and some of the questions you might be asking:

1. Am I a cancer survivor?
2. What are the stages that survivors go through?
3. What are the physical impacts of cancer treatment?
4. How do I make sure I get good follow-up medical care?
5. What are the social and emotional impacts of living with and beyond cancer?
6. What are some of the financial impacts of cancer?
7. What are some tools for cancer survivors?

Am I a cancer survivor?

A cancer survivor is commonly defined as anyone who has been diagnosed with cancer, from the time of diagnosis and treatment through the remaining years of life. Recently, some organizations have expanded that definition to include the people in a cancer patient's life who have been affected by the diagnosis, from family members to friends and caregivers. In this guide, however, the term cancer survivor refers to anyone who has been diagnosed with the disease.

What are the stages that cancer survivors go through?

Fitzhugh Mullen, a physician, author, and cancer survivor, was among the first, in 1985, to discuss the cancer journey as occurring in stages. Since then, others also have described the stages cancer patients typically go through. Most break it down into some version of the three basic stages outlined below by the Centers for Disease Control and Prevention and the Lance Armstrong Foundation and presented in the "National Action Plan for Cancer Survivorship: Advancing Public Health Strategies" in 2004:

Living with cancer refers to the experience of receiving a cancer diagnosis and any treatment that may follow. During this time, patients may be offered treatment options such as surgery, chemotherapy, and radiation therapy as well as medications to manage side effects of the treatments. Many are asked whether they would like to join a clinical trial, in which new cancer drugs and treatments are studied. They also may be offered services to help them and their caregivers cope with their emotional and practical concerns.

Living through cancer refers to the period following treatment in which patients are at a relatively high risk of a recurrence of their cancer. At this stage, many patients are relieved that treatment is over but anxious about the fact that they no longer see their cancer doctor on a daily, weekly, or monthly basis. During this stage, patients typically see their cancer doctor every three, four, or six months, depending on their circumstances.

Living beyond cancer refers to post-treatment and long-term survivorship. Fully two thirds of cancer survivors say their lives return to what they knew before they had cancer. One in three, however, says that physical, psychosocial, or financial consequences continue. During this stage, most survivors no longer consult with their cancer doctor on a regular basis. Ideally, they will have developed a plan for their ongoing healthcare with their cancer doctor, but at this point see an internist or general practitioner, who oversees its implementation.

What are the physical impacts of cancer treatment?

Most people expect that cancer treatments will be accompanied by a variety of unpleasant side effects, including pain, fatigue, weight loss, hair loss, nausea and vomiting, shortness of breath, and incontinence. These physical side effects may result from both the cancer and its treatments. While you are in treatment, your doctors can give you medications and strategies to minimize or eliminate the worst of them. You also may benefit from yoga, acupuncture, and massage, among other complementary approaches.

While some of the side effects disappear when treatments are finished, others may linger for years or not become apparent until years later. Side effects that appear months or years after treatment has ended are called late effects. These include physical conditions, such as heart failure or osteoporosis, psychological problems, and second cancers. Side effects that may begin during treatment and persist beyond the end of treatment, such as infertility or memory loss, are known as long-term effects.

For cancer survivors, staying well means maintaining a healthy lifestyle with proper exercise and nutrition. The American Cancer Society and the American Heart Association recommend moderate to vigorous exercise for at least 30 minutes each day. This can include a brisk walk, swimming, gardening, housework, or dancing. They also recommend eating five or more servings of fruits and vegetables each day, including whole grains and legumes, such as lentils, brown rice, and beans. It also is important to stay at a healthy weight, avoid smoking, and to drink moderately, if you drink at all. Talk to your doctor to determine the best practices for you to follow.

Another aspect of staying well is adhering to follow-up guidelines. Depending on the type of cancer you have had and the types of treatments you received, your cancer physician may make special recommendations. It is important to follow these conscientiously.

This section has more on:

• Physical impacts of treatment for different types of cancer
• Major late and long-term side effects

Physical impacts of treatment for different types of cancer

In a study of 5,836 cancer survivors whose median age was between 51 and 71 years, researchers identified the top major physical impacts of treatment for different cancers.

The following section of this guide has suggestions for good long term follow-up care for survivors of these same cancers.

• Acute leukemia: The four most frequently reported types of health problems were arthritis/osteoporosis (19.1 percent), memory loss (14.7 percent), migraine headaches (10.3 percent), and heart problems (10.3 percent).
• Bladder: Information on the most frequent types of health problems in survivors of bladder cancer is not available at this time. Discuss your own situation with your doctor.
• Breast: The four most frequently reported types of health problems were arthritis/osteoporosis (37.6 percent), cataracts (19.1 percent), heart problems (15.3 percent), and thyroid problems(11.1 percent).
• Chronic leukemia: The four most frequently reported types of health problems were cataracts (18 percent), arthritis/osteoporosis (18 percent), frequent infections (15 percent), and heart problems (15 percent).
• Colorectal: The four most frequently reported types of health problems were arthritis/osteoporosis (22 percent), cataracts (19 percent), heart problems (15 percent), and hearing loss (14 percent).
• Gastrointestinal: The four most frequently reported types of health problems were heart problems (19 percent), cataracts (17 percent), arthritis/osteoporosis (17 percent), memory loss (15 percent).
• Genitourinary: The four most frequently reported types of health problems were urinary (22 percent), arthritis/osteoporosis (18 percent), heart problems (17 percent), cataracts (15 percent).
• Gynecologic: The four most frequently reported types of health problems reported by survivors of gynecologic cancers were arthritis/osteoporosis (31 percent), urinary (19 percent), cataracts (16 percent), and heart problems (13 percent).
• Head and neck: The four most frequently reported types of health problems were arthritis/osteoporosis (21 percent), cataracts (19 percent), thyroid (17 percent), and heart problems (14 percent).
• Hodgkin's disease: The four most frequently reported types of health problems were thyroid (34 percent), heart problems (26 percent), arthritis/osteoporosis (14 percent), lung (10 percent).
• Kidney: Information on the most frequently reported types of health problems is not available at this time. Discuss your individual situation with your doctor.
• Lung: The four most frequently reported types of health problems were arthritis/osteoporosis (24 percent), heart problems (18 percent), cataracts (18 percent), hearing loss (17 percent).
• Lymphoma: The four most frequently reported types of health problems were arthritis/osteoporosis (25 percent), cataracts (21 percent), heart problems (18 percent), and memory loss (15 percent).
• Melanoma: The four most frequently reported types of health problems were cataracts (14 percent), heart problems (12 percent), arthritis/osteoporosis (11 percent), hearing loss (10 percent).
• Prostate: Information on the most frequently reported types of health problems is not available at this time. Discuss your individual situation with your doctor.
• Sarcoma: The four most frequently reported types of health problems were arthritis/osteoporosis (24 percent), heart problems (18 percent), circulation (12 percent), hearing loss (10 percent).
• Thyroid: The four most frequently reported types of health problems were arthritis/osteoporosis (27 percent), cataracts (13 percent), heart problems (13 percent), hearing loss (9 percent).

In another study of 518 thyroid cancer survivors, two-thirds (64.5 percent) reported that cancer affected their overall health, with the most prominent problems being those associated with the nervous and musculoskeletal systems. They also reported more memory loss and psychological problems than other cancer survivors and more migraine headaches than both other cancer survivors and the general population.

Major late or long-term side effects

Many cancer survivors face some of the following late or long-term physical side effects:

• Recurrence of the original cancer or development of secondary cancers
• Premature aging
• Damage to organs or systems
• Osteoporosis
• Diabetes
• Xerostomia
• Lymphedema
• Neuropathy
• Pain
• Fatigue
• Hypothyroidism
• Infertility
• Sexual dysfunction
• Incontinence
• Learning and memory problems
• Eyesight, hearing, speech, and dental problems

Recurrence of the original cancer or the development of secondary cancers

All cancer patients live with the possibility that their cancer will recur or spread (metastasize). Some patients also may develop secondary cancers; in some cases, these may even be a result of the treatment they went through for their original cancer. For instance, many women treated with cobalt radiation in the 1970s for Hodgkin's disease, a type of lymphoma, developed breast cancer in the late 1980s and 1990s.

Premature aging

One of the most common side effects of certain chemotherapies and radiation for women is early menopause. Women in these circumstances not only see their periods stop but may also experience hot flashes, vaginal dryness, a lessening of desire, and pain with intercourse. Further, like other post-menopausal women, they are at increased risk for conditions like osteoporosis. In addition, other cancer treatments can age or damage vital organs. For example, the drug Herceptin and doxorubicins can cause heart damage.

The effects of cancer treatment on men also can bring about conditions seen more commonly in older men, including osteoporosis, incontinence, infertility, and erectile dysfunction, or impotence.

Damage to organs or systems

Certain treatments damage some organs and body systems, causing long-term health problems. These may become apparent only as the survivor ages or develops some other medical condition years after therapy. So it is important to have an annual cancer follow-up examination or evaluation for 10 years and, in many cases, longer.

In a study, by gender, of 5,836 long-term cancer survivors, whose median age was between 51 and 71 years, the following side effects were the most frequently reported:

• Arthritis/osteoporosis: 33 percent of women and 16 percent of men
• Cataracts: 17 percent of women and 14 percent of men
• Heart problems: 14 percent of women and 17 percent of men
• Kidney/bladder problems: 10 percent of women and 14 percent of men
• Hearing loss: 10 percent of women and 15 percent of men
• Thyroid problems: 12 percent of women and 6 percent of men
• Memory loss: 9 percent of women and 8 percent of men
• Diabetes: 8 percent of women and 9 percent of men
• Circulation problems: 11 percent of women and 11 of men

Among this same group of survivors, certain problems became more prevalent with the passage of time: Arthritis/osteoporosis affected only 4 percent of survivors who were five to 10 years out from treatment but 39 percent of those who had survived 35 years or more. The prevalence of cataracts went from 2 percent to 31 percent; of circulation problems, from 8 percent to 14 percent; of diabetes, from 7 percent to 12 percent; of hearing loss, 3 percent to 20 percent; of heart problems, from 9 percent to 26 percent; of kidney/bladder problems, from 11 percent to 17 percent; and of thyroid problems, from 9 percent to 19 percent.

The one notable reversal with time was memory loss, which dropped from 11 percent to 7 percent for the longtime survivors.

Here are the most frequent side effects associated with types of treatment:

• Radiation: Both total-body radiation and radiation to any particular area of the body can damage bones. In head and neck patients, it can cause osteonecrosis of the jaw (a loss or breakdown of the jawbone due to inadequate blood flow) or delayed skeletal fractures. It also can cause changes in saliva secretion. Skin problems from radiation treatments include persistent hardening and pain.
• Steroids: Used to treat certain cancers like acute lymphocytic leukemia, these drugs can cause scoliosis or kyphosis (abnormal curvature of the thoracic spine, known as hunchback). Cataracts also can result from steroid use.
• Cancer medications: Certain chemotherapies and drugs may cause problems for some organs:

Gonads: cyclophosphamide, nitrogen mustard, procarbazine, or nitrosoureas

Liver and intestines: most chemotherapy agents

Kidney or bladder: cisplatin or nitrosoureas, cyclophosphamide, or ifosfamide

Heart: anthracyclines, cyclophosphamide

Lungs: bleomycin, nitrosoureas

Cataracts and tear-duct fibrosis: 5-fluorouracil

Both men and women may experience changes in the endocrine system as a result of therapies that deprive the body of the sex hormones that many cancers need to grow. For women and men alike, side effects can include loss of sex drive, memory loss, anemia, loss of lean muscle mass, depression, fatigue, weight gain, and loss of body hair.

Osteoporosis

Bone loss is a common side effect for survivors of such cancers as lymphoma, leukemia, breast, and prostate. Two factors contribute to bone loss with all these cancers. First, cancer cells produce activators of bone breakdown, which cause bone loss. Second, many treatments for them include cortisonelike drugs, which lead to bone loss. In addition, patients are living longer—and bone loss is a common result of the aging process.

For prostate cancer patients, bone loss also can stem from cancer cells in the bone marrow and treatments that block testosterone's effects or reduce levels of testosterone, a hormone important to skeletal health.

For younger breast cancer patients, another factor contributing to bone loss is the early onset of menopause as a result of chemotherapy. While hormone replacement therapy can help protect against Osteoporosis, women with breast cancers that are hormone sensitive are discouraged from using HRT. Studies indicate that it can increase the risk of breast cancer recurring or the development of endometrial cancer.

Another class of drug that protects against osteoporosis and other bone-related cancer complications, yet puts a small but significant number of breast cancer and multiple myeloma survivors at risk for other problems, is the bisphosphonates. In a small yet significant fraction of breast cancer and multiple myeloma survivors, these drugs, when delivered intravenously, may cause a loss or breakdown of the jawbone due to inadequate blood flow.

The American Society for Clinical Oncology (ASCO) offers guidelines for good bone health. These include regular monitoring of bone density, quitting smoking, adequate dietary intake of calcium and vitamin D, and engaging in weight-bearing exercise, such as walking and weightlifting.

Higher risk of diabetes

The use of steroids in some treatments, such as those for acute lymphocytic leukemia, colon cancer, pancreatic cancer, and mantel cell lymphoma, may cause hyperglycemia, an elevation of blood glucose levels, in some patients who do not have diabetes. It is not yet known whether these patients go on to develop diabetes; however, they definitely are at higher risk because even after treatment stops, their glucose levels may remain elevated.

Xerostomia

Xerostomia, or dryness of the mouth, is a common side effect in survivors of head and neck cancers because salivary glands are uniquely sensitive to damage from radiation. This dryness alters the sense of taste; makes it harder to swallow, sleep, and speak; and is associated with loss of appetite.

Lymphedema

It is estimated that 12 percent to 25 percent of breast cancer patients develop this condition as a late effect of surgery and radiation therapy. In these women, damage to the lymph nodes under the arm during radiation, or their surgical removal, causes an interruption in the flow of fluid within the lymphatic system. The fluid that accumulates in the tissue can cause painful inflammation, limit function, and increase the risk of infection.

While most women experience lymphedema in the first year after treatment, others may not develop the condition for as long as four or more years later.

Neuropathy

One of the most difficult side effects that cancer survivors deal with is neuropathy, a tingling or burning sensation in the hands and feet. If it intensifies, it can affect sensory motor functions, like walking or holding things between the index finger and thumb.

Neuropathy refers to a disturbance of function or pathological change in a nerve and can be caused by radiation, surgery, and some of the most effective yet toxic chemotherapies, such as taxanes, platinum, vincristine, and thalidomide. The drug bortezomib, an important treatment for leukemia and myeloma patients, also can cause neuropathy. The damage to the nerves that causes neuropathy is generally thought to be irreversible and can progress.

Pain

Pain can be a side effect of treatment or stem from the cancer itself. While every day more is being learned about pain in patients going through active treatment, little still is known about long-term pain among disease-free survivors, despite the fact that in many it is severe and compromises quality of life.

It is not uncommon for there to be a communication barrier between doctors and survivors when it comes to pain. Many doctors don't ask—despite the fact that most understand now that ignoring pain can interfere with healing. And many survivors don't tell because they think they have to put on a good face for the doctor. Increasingly, however, survivors understand that when talking with healthcare professionals about their pain, they should view it in relationship to how they function in the world: How does their pain compromise that ability to function?

Activities that may be impaired by increasing pain include the ability to enjoy life and work, to be in a good mood, to remain active, and to sleep, walk, and relate. More hospitals are routinely using a pain control scale to assess pain and monitor the effects of medication on cancer patients.

Fatigue

The most common complaint of cancer survivors is fatigue. Cancer-related fatigue is a clinically defined symptom that results from the cancer, its treatment, and the side effects of the treatment. Like pain, it can affect every aspect of a survivor's daily life and disrupt sleep. Survivors often complain that they can't get over feeling tired, regardless of the amount of sleep or rest they get.

If you are experiencing fatigue, talk to your physician about an exercise program that might help, learn relaxation skills, conserve energy by finding simpler ways to accomplish daily tasks, take a good look at your diet, let others help you, and learn to say "no" to the things that don't matter so much to you.

Hypothyroidism

Survivors of Hodgkin's disease (a type of lymphoma) who were treated with radiation therapy often suffer from hypothyroidism, a condition in which there is too little thyroid hormone. Symptoms include weight gain, constipation, dry skin, and sensitivity to cold. Hypothyroidism can be treated with medication.

Infertility

Either chemotherapy or radiation may cause infertility. For young men and women or young couples, who have not had children or completed their families, this can be devastating. In women, chemotherapies with alkylating agents, such as cyclophosphamide, are very toxic and can directly damage the ovaries. This may bring about irregular menstrual periods, the end of periods (sometimes permanent), or menopausal symptoms such as bone loss.

Men with cancers of the small and large bowel, rectum, anus, kidney, bladder, ureters, urethra, penis, prostate, and testes who have had chemotherapy and radiation therapy are at increased risk of erectile dysfunction and infertility. Chemotherapies that affect fertility in men include alkylating and methylating agents, vinca alkaloid, antimetabolite, and platinum.

However, there are increasing opportunities for preserving reproductive ability for both men and women. For example, young men about to enter treatment are encouraged to bank sperm. There also are possible assisted reproduction options for men unable to ejaculate, such as extraction of immature sperm for use in in vitro fertilization; transplantation of gonadal tissue, preserved before treatment; and treatment with gonadotropin-releasing hormones or administration of testosterone to restore the ability of sperm to perform normal spermatogenesis.

For women, the possibility of in vitro fertilization can be investigated, but it is far from a generally available option. It requires hormone treatments, which are not recommended for women with hormone-sensitive tumors. Other possibilities include using an egg donor, a surrogate pregnancy, or adoption. A few other options are under investigation.

Sexual dysfunction

Depending on the type of cancer, certain treatments may cause sexual dysfunction or bring on early menopause.

Erectile dysfunction is a common physical and emotional problem following treatment for prostate cancer. How this affects a survivor's quality of life seems to vary. However, a significant number of men report dissatisfaction with their sexual function following cancer treatment.

Early menopause in women survivors can affect sexual functioning. Because women with estrogen-receptive cancers may be discouraged from using hormone replacement therapy, their options for addressing menopausal problems—such as vaginal dryness, hot flashes, and osteoporosis—are somewhat limited.

Other side effects of treatment can potentially affect sexual function as well. For example, 50 percent of women taking tamoxifen report irregular menstrual cycles with heavy bleeding or no period at all. Because the drug's properties work against the production of estrogen, side effects can include hot flashes, joint pain, headaches, mood swings, and vaginal dryness—all of which can affect sexual desire.

Researchers are searching for interventions to help partners work through these challenges together and rekindle or keep alive intimacy in their relationship. Survivors experiencing sexual dysfunction should try to bring this topic up in discussion with their medical team, even if it feels awkward at first.

Incontinence

Removal of certain organs, such as the prostate or bladder, can increase the possibility of incontinence or leakage during coughing, sneezing, or straining. Some patients who have had the bladder removed have a rebuilt bladder called a Studor Pouch, made from part of the small intestine. This pouch performs part of the bladder function but has no muscle control. Survivors usually practice exercises that help build up an element of control, but incontinence during sleep is inevitable.

Learning and memory problems

Research on cognitive functioning in cancer patients shows that many individuals have problems with learning and memory during and immediately after treatment. When this cognitive decline is due to chemotherapy it often is referred to as "chemobrain."

Researchers also have discovered that the cancer itself may affect verbal learning and memory functions. While they're not yet sure why this happens, they think it may be related to changes in hormone levels or an inflammatory or autoimmune reaction provoked by the disease.

This research is still in its infancy. Important to note, however, is that memory loss is one side effect that improves in long-term survivors.

Eyesight, hearing, speech, and dental problems

Your cancer and its treatment may affect your eyesight, hearing, speech or mouth. Examples of how these areas of your body can be affected are as follows:

Eyesight: Radiation around the area of the eye may increase the risk of eye problems such as cataracts. Taking steroid medications also can increase your risk for cataracts. For children, radiation to the bones near the eye may slow bone growth and stop them from forming correctly. In addition to steroid medications and radiation, other cancer drugs can lead to problems such as blurred vision, double vision or glaucoma. If you have problems with your vision during or after your treatment, your doctor may refer you to an ophthalmologist (eye specialist).

Hearing and speech: Certain chemotherapy drugs and antibiotic medications may cause hearing loss. Radiation to the brain or ear may lead to hearing loss as well. Hearing aids may help correct problems caused by your treatment. If you have problems with your hearing, you may be referred to an audiologist (hearing specialist). After certain surgical procedures to the head and neck, your speech, your ability to swallow and your ability to communicate may be affected. If you have problems with your speech, your doctor may refer you to a speech pathologist.

Dental: Chemotherapy may affect tooth enamel and increase the risk of long-term dental problems. High-dose radiation to the head and neck area can change tooth development and cause gum disease. Or, it may cause tooth decay or loss and decrease the amount of saliva (spit), causing a dry mouth. Mouth or throat soreness and/or ulcers may result from your cancer treatment as well. These side effects can be painful and can make it difficult for you to eat, talk and swallow. You may be referred to a specialist if you have problems with your teeth, gums, or mouth.

Cancer survivors should have regular check-ups to help find or prevent any eyesight, hearing, speech, or dental problems. If any of these issues need attention, ask your doctor to refer you to the appropriate specialist.

How do I make sure I get good follow-up medical care?

Most cancer survivors leave the care of their cancer doctors or surgeons and return to their primary-care physicians when they reach a specific stage of recovery or the five-year survival mark, depending on the type of diagnosis and treatment. Because they may see a doctor who is unaware of their previous cancer experience or who may know little about it, it is vitally important for survivors to develop a long-term follow-up plan with their cancer doctor before transitioning to a primary-care setting.

This plan should include information about:

• the cancer diagnosis
• the treatment
• potential consequences of the cancer and treatment
• recommendations for the timing of follow-up visits
• the kinds of tests that should be performed during the visits

This information helps primary-care physicians understand whether the issues they may deal with are routine or related to a survivor's cancer, in which case it may be appropriate for the survivor to check back in with a cancer doctor. For example, if a survivor has been treated with a chemotherapy such as doxorubicin or with radiation therapy, the plan would note that there is a moderate risk of heart problems.

Each plan should be tailored to the individual, taking into account the cancer itself (its type and stage and its grade and molecular characteristics), the survivor's overall health (including his or her age and any other disorders or syndromes he or she might have), and the treatment (including, timing, dosage, and duration). The plan also might offer tips for staying healthy and preventing recurrences or secondary cancers.

Survivors also need to know their legal rights regarding employment and insurance, and about psychological and support services that might be available to them.

Guidelines for long-term follow-up care

Most official guidelines for follow-up care focus only on the first five years of survival. The guidelines below for longer-term follow-up care are based on the educated opinions of cancer specialists. (As yet, there is no research formally proving that adhering to these guidelines will extend the lives of survivors.)

These guidelines are offered as a starting point for discussing your health with your primary-care physician. Each person's medical situation is different, so it is important to talk with your physician about a plan for your long-term follow-up care.

Acute leukemia:Long-term follow-up care for acute myelocytic leukemia and myelodysplastic syndromes (MDS) might include a medical history and physical exam and a complete blood count annually.

Bladder: Long-term follow-up care for bladder cancer survivors might include a medical history and physical exam annually. If a cystectomy was performed, survivors also should have urine cytology annually. If no cystectomy was performed, individuals should undergo cystoscopy annually.

Breast: Long-term follow-up care for survivors of both noninvasive (DCIS and LCIS) and invasive breast cancers might include a medical history and physical exam, and a mammogram annually. For survivors of invasive breast cancer, if on tamoxifen, a pelvic exam and PAP smear annually. If treatment included chemotherapy, a complete blood count, liver function tests, an alkaline phosphatase test (for abnormal levels of the enzyme), and assessment of bone health should be done annually.

Chronic leukemia: Guidelines for long-term follow-up care are not available. Discuss your situation with your doctor.

Colorectal: Long-term follow-up care might include a medical history and physical exam annually, and a colonoscopy, if recommended by your physician.

Gastrointestinal: Information on long-term follow-up care is not available. Discuss your situation with your doctor.

Gynecologic: Long-term follow-up care might include these recommendations: for survivors of cervical cancer, a medical history and physical exam with pelvic exam, PAP test, and chest X-ray annually; for survivors of endometrial cancer, a medical history and physical exam with pelvic exam annually, and a CA-125 blood test (if CA-125 levels are elevated); for survivors of ovarian cancer, a medical history and physical exam with pelvic exam annually, and a CA-125 blood test every visit (if CA-125 levels are elevated).

Head and neck: Long-term follow-up care might include these recommendations: for survivors of larynx and tongue cancers, a head and neck history and physical exam and chest X-ray annually. Optional tests include a barium swallow annually, liver function tests annually, and if the survivor received radiation therapy, a test of blood levels of thyroid-stimulating hormone and calcium annually.

Hodgkin's disease: Information on long-term follow-up care for survivors of Hodgkin's disease is not available at this time. Discuss your situation with your doctor.

Kidney: Long-term follow-up care might include these recommendations: for survivors of stages T1, T2, or T3 cancer, a medical history and physical exam annually; for stage T4 survivors, a medical history and physical exam, a chest X-ray, a CT scan of the abdomen, liver function tests, and an alkaline phosphatase test (to check for abnormal levels of the enzyme), all annually.

Lung: Long-term follow-up care might include these recommendations: for survivors of small cell lung cancer (SCLC), a medical history and physical exam, a chest X-ray, and lab test; for survivors of non-small cell lung cancer (NSCLC) stages I and II, a medical history and physical exam and chest X-ray annually; for survivors of NSCLC stage III, a medical history and physical exam, chest X-ray, and lab tests annually.

Lymphoma: Long-term follow-up care might include a medical history and physical exam, a chest X-ray, and urinalysis annually; in addition, for women, a mammogram at 40, then annually (start at age 30 if you've had radiation to the chest area), and thyroid function tests annually (if radiation to upper body); adult vaccines as recommended by the Centers for Disease Control and Prevention, especially for those who have had their spleen removed.

Melanoma: Long-term follow-up care might include these recommendations: for survivors of melanoma in situ, a medical history and physical exam, including a skin exam annually; for survivors of other skin cancers, a medical history and physical exam including careful skin exam, a chest X-ray, and lab tests annually.

Prostate: Long-term follow-up care might include these recommendations: for survivors of post-definitive therapy, PSA test every six months; for survivors under observation with life expectancy more than 10 years, a PSA test every six months and digital rectal exam every six months. Consider also a transrectal ultrasound annually. For survivors of NxM1, TxN1, or post-androgen ablation, physical exam, PSA test, and DRE are recommended every three to six months, plus a bone scan if PSA levels are elevated on two occasions.

Sarcoma: Long-term follow-up care might include these recommendations: for survivors of primary bone sarcoma (high grade), a medical history and physical exam, a chest X-ray, lab work, and plain films of the primary site annually, and, in addition, a bone scan for symptomatic patients with history of bone metastases and a CT scan of chest if X-ray results are unclear; for survivors of soft-tissue sarcomas, a medical history and physical exam, a chest X-ray, and lab tests annually, plus a CT scan of chest if the results of the chest X-ray are equivocal.

Thyroid: Long-term follow-up care might include these recommendations: annual history and physical, serum T4, thyroid stimulating hormone (TSH), chest X-ray, and additional imaging studies such as an ultrasound in selected cases.

What are the psychosocial, emotional, and spiritual impacts of cancer?

As a cancer survivor, you know that the effects of the disease and its treatments are not merely physical. There are psychological, social, emotional, and spiritual impacts as well, and many times it is difficult to separate these from the physical effects because they can be closely intertwined. Many of these affect quality of life, including fear, anxiety, anger, depression, frustration, and changes in family roles, self-image, and self-esteem. And like cancer's physical impacts, they may be felt years later.

There are no guidelines for how to survive survival. Indeed, many of these impacts may come and go and play different roles at different times during and after treatment.

This section addresses:

• Fear of recurrence
• Anxiety
• Grief
• Depression
• Body image and self-esteem
• Spiritual effects
• Survivor guilt
• Social impact
• Relationships
• Re-entering life and the workplace

Fear of recurrence

For many people, the fear of recurrence is at a relatively low ebb during treatment. However, as you move back into your old life, the fear of recurrence can become stronger. It can loom especially large when you approach the anniversary of your diagnosis or when you are released from your cancer doctor's care. This fear can have both a positive and negative aspect. It is a healthy response when it prompts you to talk about a new ache or change in your body with your doctor. But it can also paralyze you and cause unnecessary worry.

Survivors report that at these times, there are certain things you can do to help cope with this fear. For stress, you can write down your thoughts and feelings in a journal or try other complementary modalities like yoga, tai chi, guided imagery, reflexology, and massage. You also can adopt problem-focused behavior by making a plan and taking an action. For example, for a headache that you worry may be due to a recurring or new cancer, take an aspirin and see if that gets rid of the pain—if it does, it's probably not cancer. Other coping mechanisms can be sharing concerns with a friend or support group. Talking often reduces fears and anxieties. Also, it's important to know your body, so you can discern between normal bodily changes and signs of more serious illness.

Anxiety

A natural reaction to a cancer diagnosis is anxiety. Suddenly one is consumed by frightening questions: Will I live? How long will I live? Will I be able to tolerate the surgery or other treatments? Will they work? What will happen to my spouse? Who will take care of my children if I die? Will my health insurance cover the costs of treatment? How will I make sure that we have enough money to survive?

Grief

Another emotion that can affect you as a cancer patient is grief—a natural result of all that you feel you've lost. Many losses may come with cancer. You may see a big drop in your sex drive. You may lose your sense of security in the world or the feeling that you are a healthy person. Young women who have entered early menopause may feel that they've lost their youth and femininity along with their fertility. If the cancer or treatment has left you with a disability, you may feel as if you've lost your independence. It is important to let yourself experience all these feelings of anxiety, grief, sadness, and anger to get past them. Support groups, as well as individual and family counseling, can help you work through these issues.

Depression

It is estimated that 70 percent of cancer survivors experience depression at some time during their cancer journey. Symptoms can include helplessness, hopelessness, poor self-esteem, feelings of guilt or worthlessness, and thoughts of suicide. It has often been difficult for healthcare professionals to diagnose a survivor's depression since some symptoms resemble the side effects of treatment, including poor appetite, weight loss, fatigue, insomnia, and inability to concentrate.

Researchers are finding that these feelings may also have a biological origin when cytokines (proteins secreted by cells that regulate a variety of cellular processes, including the immune response) become inflamed. These cytokines may cause such reactions as anxiety, irritability, inability to get pleasure from usually pleasurable activities, and a lack of energy.

It is important to seek help for depression in part because a 10-year follow-up study has found that symptoms of depression were associated with a shorter survival time.

Body image and self-esteem

Cancer survivors may face issues of low self-esteem and self-image, since radiation tattoos, amputations, eye patches, and facial disfigurements can deeply affect how they see themselves in the world and how they relate to other people. There often is avery logical sense of loss: loss of a body part, loss of femininity or masculinity, loss of menstrual period, loss of bladder control. This is especially true for those who have suffered a disfigurement or for women who have had radical mastectomies. Survivors of head and neck cancers are often seriously disfigured.

Those who have had a urostomy or a colostomy (the surgical creation of an artificial opening for elimination of body waste), for example, may feel self-conscious and uncomfortable in public. Body image and self-esteem can affect a survivor's ability to regain intimacy with a partner. Women who have had a mastectomy or men who have had a prostatectomy (removal of the prostate) may find this especially difficult.

Intimacy, experts emphasize, includes more than just sex. It concerns touching and holding another person, caring about the other person, and sharing feelings, hopes, and fears. Because social support is so important through the cancer experience, the ability to be intimate can have an impact on a survivor's quality of life. Any type of cancer can affect sexuality, which is a complex combination of physical, psychological, spiritual, and emotional components. Good communication is a key to retaining or regaining intimacy after cancer. When problems continue, it's important to seek medical advice.

Spiritual effects

Like many survivors, you may find that your life takes on new meaning after cancer. Your values may have changed; your family may have assumed a new importance; other personal relationships may have become stronger; or you may have committed to giving back to others in the cancer community. Some people become more committed to a spiritual practice or an organized religion and rely on their faith to support and comfort them through illness. On the other hand, some wrestle with the question, "Why me?" and see cancer as a punishment. They may think God has abandoned them. Still others feel they are victims of the randomness of the universe or flawed genes.

It is clear that more survivors are following a holistic approach, which considers the body, mind, and spirit/soul as a whole, to living with and beyond their disease. Researchers also are exploring the hypothesis that spirituality may prove beneficial to a person's health and quality of life because it is associated with his or her social support network, adaptive coping, lessened depression and anxiety, and better physiological functioning.

Survivor guilt

Some survivors feel a sense of guilt for living when many others don't make it. As a survivor, you may be inclined to ask, "Why am I the one to survive?" You may then struggle with another question: "If I have survived, what is the meaning of my life now?" This may cause you to re-evaluate your life and reprioritize your goals and ambitions.

If you suffer from a prolonged sense of guilt, a pastor or priest, a psychotherapist, a support group, or a good friend can help ease your turmoil by talking you through the feelings.

Social impact

When President Richard Nixon proposed a "war on cancer" in 1971, most people were reluctant to even use the word. If cancer was mentioned at all, it was in hushed tones and often was referred to as the "Big C." Because little was known about its origins, people were afraid of the stigma that would follow them if they talked of their illness.

While the culture of cancer has changed dramatically since then, many young adults diagnosed with cancer say that a certain stigma still exists. They often are reluctant to reveal to their employer or coworkers that they are undergoing treatment for fear they will be ostracized or seen differently by their colleagues, or lose their job and their health insurance. This creates an atmosphere of uncertainty and instability that contributes to emotional stress.

Relationships

Researchers have found that one of the biggest challenges cancer survivors face lies in how the people closest to them react. So often, friends and coworkers and even family members don't know how to communicate their concern and simply remain silent. The result can be feelings of abandonment on the part of the cancer survivor. Because cancer can be a long-term illness, overcoming communication barriers early is an important step in easing distress.

As a cancer survivor, you may find that many people don't know what to say or how to act. They may stay completely away. They may pretend nothing has happened. Or they may play the "distracter" role, joking to take your mind off the disease rather than being someone with whom you can discuss the serious issues confronting you.

There may be others who continue to see you as "sick" even when your cancer is in remission and you have survived for more than the five "benchmark" years. These people may continually tell you how good you look or ask you how you really feel or make other comments that indicate that you are seen as different. You do not need to share anything about your condition that makes you uncomfortable. You can thank them for their concern and continue to lead your life.

Re-entering life and the workplace

Cancer survivors may experience a decreased sense of social well-being as they attempt to reintegrate into their previous social and professional lives. This can result from the way they have been treated by friends and acquaintances throughout their diagnosis and treatment. While society's attitude toward cancer has come a long way, cancer survivors periodically may have to work with those who do not understand that cancer is not an infectious or necessarily fatal disease.

Re-entering the work world can be accompanied by other fears: worrying about being out in the world with an increased risk of infection; fearing there won't be enough energy to get through a workday; and feeling anxious about not being able to think clearly because of "chemobrain" or memory loss.

At the end of the day, cancer survivors may feel somewhat apart from their coworkers because they have faced life-and-death questions that so many of their peers have not. They may find new community not among their coworkers but among other cancer survivors.

What are some of the financial impacts of surviving cancer?

Cancer survivors often incur debt, diminished income, and job issues. This can result from the expense and length of treatment, the period in which a patient's health is seriously compromised, and the difficulties of negotiating with health insurance companies and managed-care providers—all of which may occur simultaneously. Few people escape the financial fallout of surviving cancer. It is estimated that out-of-pocket medical expenses average $35,000 per cancer patient. Fortunately, many hospitals and cancer centers now have case managers to help patients and survivors navigate the payment systems.

Yet, even survivors with good health insurance have reported paying as much as a $750 copay for one cycle of chemotherapy in a regimen that called for six cycles. This, and other costs over and above insurance coverage, can lead to considerable medical debt for a family. The costs of treatment are so high that cancer centers are unable to accept patients who do not have health insurance or other financial resources.

If a patient chooses to be treated at a comprehensive cancer center far from home, medical bills will be accompanied by the additional costs of hotels, meals, and travel, for example. If the patient is the major wage earner, the family income is apt to drop and even cease once vacation and sick time are used up. And the person's spouse may need to take time off work to take care of the patient and the family.

Some cancer survivors are forced into early retirement, which may leave them without health insurance or make it difficult for them to find another job that will provide health, disability, and life insurance. Others, unable to meet the costs of care, have had to file for bankruptcy.

What are some tools for cancer survivors?

These tips, provided by other survivors and healthcare professionals, may ease your journey.

• Make sure you have complete copies of your medical records, including your medical history; your cancer diagnosis; the type of surgery; chemotherapy regimens and dosages; and the number and location of radiation treatments, pathology, X-ray films, CT scans, PET scans, etc.; any complications encountered; and any late side effects your doctors and nurses think you might expect, such as risk factors from the types of treatments you had. This information will be invaluable if you change physicians, for example.
• Because of the Americans with Disabilities Act, passed in 1990, you cannot be denied a loan or other financial service because of your cancer history. It is important to know your civil rights. On the federal level, basic information is available on the U.S. Department of Health and Human Services website at HHS.gov/ocr —the Office of Civil Rights. The eight regional offices listed can help you: a) understand the rules and regulations, and b) process your complaints. In addition, you should know the rules and regulations in your state. There often are policies in place to help cancer survivors deal with the economic challenges they may face, especially as concerns their job rights, health insurance claims, and protection of assets. Some states even have independent review boards to arbitrate claims at no cost to the cancer survivor.
• Advance directives allow you to plan for your care should the time come when you are unable to tell others the type of medical care you would like to have. While advance directives vary from state to state, they fall into three basic types:

The medical power of attorney is a legal document in which you give someone the authority to make healthcare decisions for you when you are no longer capable of making them yourself. Healthcare decisions involve any treatment, service, or procedure to maintain, diagnose, or treat your physical or mental condition. A medical power of attorney takes precedence over any other document, as far as healthcare decision making is concerned.

The living will communicates your wishes about specific types of life-sustaining medical care but takes effect only when you are in the terminal or irreversible phase of illness or injury.

The out-of-hospital do-not-resuscitate order is signed by a physician and allows a patient to refuse cardiopulmonary resuscitation, or CPR, when outside the hospital. If you do not have this order, healthcare providers, including ambulance personnel, may do everything medically possible to start your heart and help you breathe. Each state has its own requirements. These can be found at the following website: USLivingWillRegistry.com/forms.