Cancer Survivorship

Moving Forward

Living With, Through and Beyond Cancer

Legal & Financial Impacts of Cancer

Few people escape the financial repercussions of surviving cancer. For patients who must self-pay, the cost of treatment for the first year alone can exceed Rs 3,00,000. For patients with leukemia or lymphoma, that amount can reach Rs 6,00,000 or more in the first year.

Even those with good health insurance have reported spending hundreds of dollars in co-payments for one cycle of chemotherapy in a treatment regimen that requires six cycles. Out-of-pocket medical expenses for these insured patients can average Rs 1,50,000.

In addition, some insurance companies may not pay for cancer treatments that they consider experimental.

Patients who receive treatment outside their hometown or state face the additional costs of travel, lodging, meals and other living expenses.

If the patient is the major wage earner, family income may decrease or even disappear once vacation and sick time are used up. Benefits may be reduced or lost. As a result, survivors and their families can face significant debt.

Financial issues can continue long after treatment has ended. Some survivors are forced into early retirement, which may leave them without health insurance coverage or make it difficult to find another job with health, disability and life insurance benefits.

While this is an issue that has not been well addressed, here is a list of considerations that may aid survivors in dealing with the economic impacts of survivorship.

The clinic addresses your physical and psychosocial care. They:

Medical coverage : Explore Medicare and Mediclaim.

Income alternatives : Look into Social Security disability income and supplemental security income.

Life insurance : Investigate if this can be an important source of cash or the basis for a loan. Keep your policy if you leave your job. Some life insurance companies offer an accelerated death benefit with a pre-death payment. Or you may be able to sell your life insurance policy to a company for a portion of its value.

Retirement plans : Find out if this could be a source of cash and a way to fund a disability. Read your benefits book so that you fully understand your plan. Funds may be available if you are still employed and meet the plan’s hardship provisions.

Managing your money : Make minimum payments on your credit card bills and keep the cards in your name only. Consider getting credit disability or credit life insurance on your card, if available.

Other important plans : Make sure you have a durable power of attorney, a living will and a regular will with a letter of instructions.

Follow-up Medical Care

Most cancer survivors eventually return to the care of their primary physicians after treatment. Since your primary care doctor may know little of your cancer experience, it's crucial to develop an individualized, long-term follow-up plan with your cancer doctor before returning to a primary-care setting.

This plan should include :

  • The cancer diagnosis
  • The treatment (including, timing, dosage and duration)
  • Potential side effects of the cancer and treatment
  • Recommendations for frequency of follow-up visits
  • Types of tests to be performed during appointments
  • Tips for staying healthy and preventing recurrences or secondary cancers

Most official guidelines for follow - up care focus 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 suggest annual tests or procedures for long - term follow - up of specific cancers :

Acute Leukemia

  • Medical history / physical exam
  • Complete blood count

Urinary Bladder

  • Medical history / physical exam
  • Urine cytology (if cystectomy performed)
  • Cystoscopy (if no cystectomy)
  • CT scan

Breast

  • Medical history / physical exam
  • Mammogram
  • Chest x – ray
  • USG abdomen
  • PET scan

Cervical

  • Medical history / physical exam
  • Pelvic exam
  • PAP test
  • Chest X-ray
  • USG abdomen

Colorectal

  • Medical history / physical exam
  • CEA, CBP
  • USG abdomen
  • Colonoscopy (if recommended by your physician)

Endometrial(Uterine)

  • Medical history / physical exam
  • Pelvic exam
  • CA-125 blood test (if levels are elevated)

Head & Neck

  • A head and neck medical history / physical exam
  • Chest X-ray
  • CT scan
  • PET scan
  • Thyroid - stimulating hormone (TSH) and calcium tests (if treated with radiation)

Kidney

  • Medical history / physical exam
  • Chest X-ray
  • CT scan of the abdomen

Lung

  • For survivors of small cell lung cancer :
  • Medical history / physical exam
  • Chest X-ray
  • CT scan thorax
  • USG abdomen
  • PET scan
  • Lab tests

Lymphoma

  • Medical history / physical exam
  • Chest X-ray
  • Mammogram at 40, then annually (start at 30 if you've had radiation to the chest area)
  • Thyroid function tests (if radiation to upper body)
  • Adult vaccines as recommended by the Centers for Disease Control and Prevention, especially if the spleen was removed
  • PET scan

Melanoma

  • For survivors of melanoma in situ :
  • Medical history / physical exam
  • Through skin exam
  • Chest X-ray
  • Lab tests

Ovarian

  • Medical history / physical exam
  • Pelvic exam
  • USG abdomen
  • CA-125 blood test (if levels are elevated)

Prostate

  • PSA test every six months
  • Digital rectal exam (DRE) every six months
  • Consider annual transrectal ultrasound
  • Bone scan (if PSA levels elevated on two occasions)

Sarcoma

  • Medical history / physical exam
  • Digital rectal exam (DRE) every six months
  • Chest X-ray
  • Lab work
  • Bone scan
  • CT scan of chest

Thyroid

  • Medical history / physical exam
  • Digital rectal exam (DRE) every six months
  • Serum T3,T4,TSH
  • Serum Thyroglobulin
  • Chest X-ray
  • USG neck
  • Additional imaging studies in selected cases like Iodine scan

Cancer Survivorship

Thanks to earlier detection, improved treatments and the supportive care of family and friends, there are now more than 30 million cancer survivors in India. One out of every six people over 65 is a cancer survivor, and 1.4 million were diagnosed more than 20 years ago.

Some survivors may live with cancer as a chronic disease requiring periodic treatments, while others may go into long-term remission. Many will lead normal lives with few side effects, if any. In fact, two-thirds of survivors report that cancer has not had a significant long-term impact on their lives.

As many survivors have learned, however, recovery is not always the end of the cancer experience. Even several years after successful treatment, cancer recurrence is always a possibility. Toxic cancer therapies can leave you with health issues that require lifelong surveillance. Finally, recovering from the social and emotional trauma of cancer can take longer than recuperating from treatment.

After decades of focus on treating cancer, researchers now face the challenge of helping survivors achieve a decent quality of life for many years after treatment has ended. According to the Centers for Disease Control and Prevention and the National Cancer Institute, 64% of adults diagnosed with cancer today can expect to be alive in five years. For children, survival rates range between 70% and 92%, with the 10-year survival rate at 75%.

Physical Impacts

The physical side effects experienced by cancer patients can be caused by the cancer itself, and/or aggressive therapies used to treat it.

Short-term side effects occur during cancer treatment. Common symptoms include nausea, hair loss, pain, fatigue and weight loss. Generally, these side effects go away after active treatment ends. Your doctor can prescribe medication to minimize short-term side effects. Complementary therapies such as yoga, acupuncture and massage can work in combination with medication for enhanced relief of cancer or treatment-related symptoms.

Long-term side effects are those that begin during treatment and continue after the end of treatment, such as infertility or memory loss.

Late side effects are symptoms that appear months or years after treatment has ended, including heart failure, osteoporosis, psychological problems and second cancers.

Physical Impacts by Cancer Type

The survivorship clinic specializes in identifying and treating late side effects, which are symptoms that may appear months or years after treatment has ended. The physical changes will depend on your cancer type and treatment.

Remember, it is important to communicate with your health care team through every stage of your cancer experience. Some survivors need more information and use more support services than others use, depending upon their diagnosis and treatment. If you have any questions or concerns, please contact your health care team.


Breast

Side effects and symptoms you may experience include :

  • Lymph edema (swelling of the arm)
  • Osteoporosis (low bone mass that results in weak bones that break easily)
  • Menopausal symptoms
  • Changes in fertility and sexuality
  • Fatigue

Colorectal

Side effects and symptoms you may experience include :

  • Neuropathy
  • Uncontrolled bowel movements that are not managed by current treatment
  • Sexual health issues

Genitourinary (Bladder, Kidney, Penile, Prostate, Testicular)

Prostate Cancer

  • Urinary incontinence
  • Erectile dysfunction
  • Urethral stricture

Kidney Cancer

  • Impaired kidney function
  • Surgical hernia

Testicular Cancer

  • Low testosterone
  • Infertility
  • Low libido
  • Numbness and tingling in the hands and feet/legs
  • Ringing in the ears
  • Impaired kidney function
  • Hearing loss
  • Shortness of breath with activity or at rest
  • High cholesterol levels
  • Hypertension

Bladder Cancer

  • Impaired renal function
  • Blood in the urine
  • Urinary incontinence
  • Recurring urinary tract infection
  • Stones in the neobladder
  • Surgical hernia
  • Stoma problems

Psychosocial/Emotional Effects

  • Depression
  • Anxiety
  • Difficulty with intimacy

Gynecologic (Cervical, Endometrial [Uterine], Fallopian Tube, Ovarian, Vulvar)

Side effects and symptoms you may experience include :

  • Osteoporosis (low bone mass that results in weak bones that break easily)
  • Menopausal symptoms
  • Changes in fertility and sexuality
  • Fatigue

Head & Neck

Side effects and symptoms you may experience include :

  • Dry mouth
  • Difficulty opening your mouth
  • Problems with bones healing, particularly the jaw bone
  • Swallowing problems
  • Painful swallowing
  • Lymph edema (swelling of the head and/or neck)
  • Hearing loss
  • Hypothyroidism (not making enough thyroid hormone)

Lymphoma

Side effects, symptoms and changes you may experience :

  • Xerostomia (dry mouth) caused by surgery or radiation therapy
  • Weight gain due to medicines and inactivity
  • Fatigue
  • Heart problems, such as shortness of breath and rapid heartbeat
  • Infertility, sexual side effects and early menopause in women
  • Osteoporosis, a condition that causes weak bones that are more likely to break
  • Neuropathy, a condition that causes numbness, tingling, burning, pinching, pain or not being able to feel sensations like hot or cold

Stem Cell Transplant Survivors

Late effects and symptoms you may experience include :

Physical Effects

  • Graft versus Host Disease (GVHD)
  • Pain
  • Lack of sleep
  • Decreased nutrition
  • Fatigue
  • Loss of bone mass
  • Dry eyes, vision changes, cataract development
  • Dry mouth, dental cavities
  • Memory and concentration
  • Infertility
  • Sexual problems
  • Risk for second cancers

Emotional Effects

  • Anxiety
  • Depression
  • Anger

Social Effects

  • Changes in roles and relationships
  • Family stresses
  • Delayed return to work or school
  • Financial concerns
  • Sexuality

Thyroid

Side effects you may experience as a thyroid cancer survivor include :

  • Increased risk for other cancers
  • Heart problems
  • Low bone mass
  • Dry mouth and dental problems
  • Voice and swallowing difficulties
  • Fatigue

Possible Side Effects of Cancer Treatment

Fatigue

Fatigue is the most common complaint of cancer survivors. Cancer-related fatigue results from the cancer, its treatment, and treatment side effects. Survivors often complain that they can't get over feeling tired, regardless of how much sleep they get. If you are experiencing fatigue, talk to your physician about coping strategies such as exercise, relaxation skills and energy conservation.

Diabetes

Steroid drugs used to treat certain cancers may increase blood glucose levels (hyperglycemia) in some patients who do not have diabetes. Although it's unclear if these patients will develop diabetes, they are at higher risk because their glucose levels may remain elevated after treatment stops.

Endocrine Changes

Men and women whose cancer treatments are designed to eliminate the sex hormones that many cancers need to grow may experience the following side effects :

  • Decreased sex drive
  • Memory loss
  • Anemia
  • Decreased muscle mass
  • Depression
  • Weight gain
  • Loss of body hair

Hypothyroidism

Survivors of cancer to the head, neck and Hodgkin's 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.

Incontinence

Removal of the prostate or bladder increases the possibility of incontinence or urine leakage depending on the type of surgery performed. Survivors with continent urinary diversion after the removal of the bladder can gain an element of bladder control through special exercises, but incontinence while sleeping is inevitable.

Infertility

Either chemotherapy or radiation may cause infertility in both sexes. In women, chemotherapies with alkylating agents such as cyclophosphamide can damage the ovaries, resulting in irregular or absent menstrual periods.

Men with colorectal or genitourinary cancers who have had chemotherapy and radiation therapy are at increased risk of infertility. Chemotherapies that affect male fertility include alkylating and methylating agents, vinca alkaloid, antimetabolite, and platinum.

Learning & Memory Problems

Many cancer patients have problems with learning and memory during and immediately after treatment. Researchers have also discovered that the cancer itself may affect verbal learning and memory functions. The good news is that memory loss is one side effect that improves in long-term survivors. Cognitive problems resulting from chemotherapy is called "chemobrain".

Lymphedema

Lymphedema occurs when lymph nodes under the arm are damaged by radiation or surgically removed as part of breast cancer treatment. Lymphatic fluid accumulates in the tissue, causing painful inflammation and limited arm function. It's estimated that 12-25% of breast cancer patients develop lymphedema, mostly in the first year after treatment. However, lymphedema can occur many years later.

Neuropathy

One of the most difficult treatment side effects is neuropathy, a tingling or burning sensation in the hands and feet due to nerve damage. Neuropathy can be caused by radiation, surgery and chemotherapies such as taxanes, platinum, vincristine, and thalidomide. Neuropathy is generally thought to be irreversible and can progress.

Osteoporosis

Bone loss is a common side effect for survivors of lymphoma, leukemia, breast and prostate cancers. Osteoporosis can be caused by the cancer itself, cortisone-type drugs, treatment-induced menopause, cancer cells in the bone marrow and treatments that affect testosterone, which is crucial to bone health.

Pain

Pain can be a side effect of treatment or from the cancer itself. While pain management in patients undergoing active cancer treatment has improved significantly in recent years, little is known about long-term pain among disease-free survivors, which can be severe and affect quality of life.

Sexual Dysfunction

Many men and women treated for cancer experience sexual side effects. Problems getting or keeping erections can occur in men, especially when the cancer begins in the pelvic organs. In women, cancer treatment can lead to sudden menopause or can worsen the vaginal dryness that occurs gradually after natural menopause. If sex becomes painful, often decreases.

Xerostomia

Xerostomia (dry mouth) is common in head and neck cancer survivors because salivary glands are susceptible to radiation damage. Xerostomia makes it harder to swallow, sleep, and speak, and is associated with loss of appetite due to altered taste.

Long Term Side Effects

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

Cancer Recurrence or Secondary Cancers

All cancer patients live with the possibility that their cancer will recur or spread (metastasize). Some patients also may develop secondary cancers, some of which may be a result of treatments used for their original cancer.

Premature Aging

Cancer patients treated with certain chemotherapies and radiation may experience health conditions normally seen in older people. One of the most common long-term side effects for women is early menopause, which also increases the risk for osteoporosis. The effects of cancer treatment on men include osteoporosis, incontinence, infertility, and erectile dysfunction or impotence.

Organ Damage

Certain types of cancer treatments can age or damage vital organs, causing long-term health problems. These may become apparent only as the survivor ages or develops other medical conditions years after therapy. Some chemotherapy drugs are known to be toxic to the heart, including Herceptin and doxorubicins.

Social & Emotional Impacts of Cancer

In addition to the physical effects of cancer, survivors will experience psychological, emotional and spiritual impacts. Many of these affect quality of life and can show up many years after treatment. Here are some of the most common issues that cancer survivors may deal with :

Fear of Recurrence

Many survivors live in fear that their cancer will come back at some point. For some, a milestone event like the anniversary of their diagnosis or the end of care by their cancer doctor can trigger these feelings. Fear can be a good thing if it motivates you to discuss health changes with your doctor, or it can cause unnecessary worry. Knowing your own body can help distinguish between normal changes and more serious symptoms.

Grief

Grief is a natural result of loss. With cancer, such losses may include your health, sex drive, fertility and physical independence. To get past your grief, it's important to let yourself experience all these feelings. Support groups and counseling can help you work through these issues.

Depression

It is estimated that 70% of cancer survivors experience depression at some time. Depression can be hard to diagnose in cancer survivors because the symptoms are so similar to the side effects of cancer treatment, including weight loss, fatigue, insomnia and inability to concentrate. A 10-year follow-up study has found that symptoms of depression were associated with a shorter survival time, so it's crucial to seek treatment for depression.

Body Image & Self-Esteem

Cancer survivors who have experienced amputations, disfigurement and loss of organs like the colon or bladder often grapple with how they relate to themselves and other people. A negative body image and low self-esteem can affect a survivor's ability for intimacy with a partner, which has a major impact on quality of life. Good communication is essential to retaining or regaining intimacy after cancer. Seek medical advice if problems continue.

Spirituality

Many survivors find that life takes on new meaning after cancer, and will renew their commitment to spiritual practices or organized religion. Research suggests that spirituality improves quality of life through a strong social support network, adaptive coping, lessened depression and better physiological function.

The Department of Chaplaincy and Pastoral Education has resources to help patients and their communities find the support they need to cope with cancer and find a spiritual pathway to peace. Spiritual Self-Assessment

Survivor Guilt

Some people feel guilty for surviving cancer when others don't. You may wonder 'why me?' or begin to re-evaluate your life goals and ambitions. If you suffer from a prolonged sense of guilt, a psychotherapist, clergy member or support group can help talk you through your feelings.

Relationships

How other people react to their illness is perhaps the biggest challenge faced by cancer survivors. Friends, coworkers and family members may feel awkward about discussing your cancer diagnosis. They may remain silent, avoid you or pretend nothing has happened. Others may use humor in an effort to take your mind off the situation, instead of being someone with whom you can discuss your issues. Because cancer can be a long-term illness, overcoming communication barriers early is crucial.

Life & the Workplace

Re-entering social and professional life can be accompanied by many fears: worry about being out in the world with an increased risk of infection; not having enough energy to get through a workday; and anxiety about not being able to think clearly because of "chemobrain" or memory loss. After struggling with life-and-death questions, many cancer survivors feel apart from peers who haven't had the same experience, and may turn to other survivors for support and friendship.

You may be reluctant to reveal that you are undergoing cancer treatment to your employer or coworkers for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, open communication with your colleagues helps get past these feelings.

Stages of Cancer Survivorship

Since the 1980s, cancer survivors and doctors have attempted to describe the stages that cancer survivors typically experience. Most break it down into some version of the three stages outlined below :

Living with cancer

Living with cancer refers to the experience of receiving a cancer diagnosis and any treatment that may follow. During this time, patients will undergo treatment and may be asked to join a clinical trial to study new cancer therapies. Patients and their caregivers may be offered services to help cope with emotional, psychological and financial concerns.

Living through cancer

Living through cancer is the period following treatment in which the risk of cancer recurring is relatively high. Many patients are relieved that treatment is over, but anxious about no longer seeing their cancer doctor on a regular basis. During this stage, patients typically see their cancer doctor two to four times a year depending on their circumstances.

Living beyond cancer

Living beyond cancer refers to post-treatment and long-term survivorship. While two out of three survivors say their lives return to normal, one-third report continuing physical, psychosocial or financial consequences. During this stage, most survivors go back to the care of their primary physician. Ideally, they will have developed a long-term health care plan with their cancer doctor to be implemented by their regular doctor.