As cancer death rate declines, survivors’ need for education rises

Provide materials that address fears, lifestyle changes, discrimination

While Laura was undergoing cancer treatment, she was covered by her husband’s health insurance policy. Then her husband changed jobs. When the new company found out about her cancer history, they denied family coverage. Laura had to search elsewhere for insurance. Finally, she was able to get insurance through her state health insurance pool.

Laura’s situation is not unusual. People who survive cancer are often faced with insurance problems, lifestyle changes, emotional issues, and even discrimination on the job. This patient population needs information, support, and education that provide answers for their unique circumstances. The cancer survivor has special educational needs that differ from newly diagnosed cancer patients or those undergoing treatment, says Alice Judkins, RN, MS, coordinator of the Long Term Survivor Breast Cancer Clinic and Surgical Oncology at MD Anderson Cancer Center in Houston.

Today, there are more than 8 million people in America who have survived cancer for five or more years. Recently, Myles P. Cunningham, MD, the national president of the American Cancer Society, predicted that the current cancer death rates will be cut by 50% within the next 20 years if current knowledge about cancer is applied.

As more people look for answers to the issues they face as cancer survivors, patient education managers will need to have pamphlets available as well as in-house resources such as support groups or a list of community resources. (See story, p. 38, for a list of resources.)

There are several issues cancer survivors struggle with. One major concern is the fear that the cancer will recur. "If you ask cancer survivors what it is like to go back to the doctor for an annual checkup, they will say that all the emotions they experienced at the time of their diagnosis come rushing back to them. It is as if those five, eight, or 15 years never existed, and they are automatically back where they were," says Judkins. "They need to know that these emotions are normal, but fear shouldn’t inhibit the quality of their life."

Often, every ache or pain is attributed to cancer. A woman may have arthritis in her hand, but if she had breast cancer and a mastectomy five years earlier, she immediately thinks the cancer has come back in her hand. To keep fear in control, patients need to learn discernment. For example, if they are having back pain, they need to determine whether it was caused by having worked in the garden that morning or it’s a constant throbbing pain they can’t attribute to any physical exertion. The signs and symptoms of recurring cancer need to be covered at each doctor visit and any other educational opportunities, says Judkins.

Focus on solving new problems

Another issue is that cancer survivors may experience lifestyle changes due to treatments, saysMichelle Melin, MA, director of patient services at Y-ME, a national breast cancer organization based in Chicago. Many women who have chemotherapy experience chemically induced menopause. Radiation treatment can cause sterility. Also, depending on the type of cancer, patients must adjust to living with artificial limbs, ostomies, and breast changes. Links to appropriate counseling and support often are vital in cancer survivors’ adjustment to these lifestyle changes.

Due to misconceptions about cancer, about one in four cancer survivors experience some form of employment discrimination. People believe that turnover rate, absenteeism, and the work performance of people with a cancer history are higher. Cancer survivors are sometimes asked to accept a lower position when they return to work; others are passed over for promotions. Yet, according to the National Cancer Institute (NCI), research shows that cancer survivors are as productive on the job as other workers, and their absenteeism is the same.

Until misconceptions about the disease disappear, cancer survivors need to learn how to handle work-related problems due to their illnesses and what their rights are according to such laws as The Americans with Disabilities Act and The Family and Medical Leave Act of 1993.

People who have health and life insurance before a cancer diagnosis are usually able to keep the policies after treatment, although costs and benefits may change. Cancer survivors who change jobs or apply for new policies often have problems obtaining health insurance. Information on how to handle health insurance matters is vital to cancer survivors, according to the NCI.

Help cancer survivors stay healthy

Cancer survivors should be encouraged to engage in healthy practices such as exercise and proper diet because they are at a higher risk for other cancers than the population at large, says Melin. Never assume cancer survivors will be more vigilant. Many start smoking again when they have completed treatment, she says.

There are many ways to provide cancer survivors with the information and educational opportunities they need. The best source of information is their peers. "People learn how to live well and deal with problems by talking with other cancer survivors," says Melin. Telephone networks and support groups can be used to connect cancer survivors with each other.

Another means of acquiring information is through organizations that print information to distribute to patients, which can be copied without written permission. For example, the National Cancer Institute publishes Facing Forward, A Guide for Cancer Survivors, which includes a list of telephone numbers of state health insurance counseling offices to aid cancer survivors with insurance problems. (See information on compiling resources for educating cancer survivors, at left.)

The more information you can give cancer survivors, and the more opportunities you give them to discuss their concerns, the better the quality of their life will be, says Judkins.