Cancer and Fear

There are three major cancer-related fears described in the research literature. These are fear of death, fear of recurrence and fear of stigma, which is fear of being thought about or treated differently.

Fear of Death
While almost all researchers in psychosocial oncology acknowledge fear of death as a problem for persons diagnosed with cancer, the findings about how and when this fear diminishes are split. Some researchers report that fear of death diminished the further away from the diagnosis period a person gets. Other researchers report that fear of death may persist for years after cancer therapy is complete. Still other researchers have noted that even after what may be considered a definitive cure, survivors are less certain about living a long life.

The experience of having cancer produces emotional scars, and it may take years before cancer is no longer the major focal point of life, until a rebalancing of life issues and problems occurs. One cancer survivor noted that it took her almost eight years before cancer receded in emphasis:

My life is a quilt, and one of those patches is cancer. It’s never not there, it just doesn’t hurt anymore.

Resuming life-oriented or life-focused thought processes after living with an acute fear of death may be a difficult transition, and the ability to make long-range plans can take months or even years.

Fear of Recurrence
Research has indicated that reactions related to the fear of recurrence of cancer range from worry and anger in the middle of the night, to panic and thoughts of suicide. We know that insufficient knowledge (being unable to know) if or when symptoms will recur can significantly affect an individual’s overall sense of control.

Acute uncertainty can persist for as long as three years after the completion of cancer therapy, and uncertainty becomes a permanent companion of the cancer experience. It often is reactivated at critical times—for example, the anniversary of your cancer diagnosis may trigger survivor reactions that parallel those present in post-traumatic stress syndrome.

These anniversary reactions include re-experiencing the diagnosis and nightmares or flashbacks about the cancer experience which stimulate anxiety.

A widely held assumption about recurrence is that an individual’s response to recurrence is worse (more distressing and disabling) than the shock of the initial diagnosis of cancer. Many researchers, however, have not found this to be the case because those persons with a history of cancer already have developed some cancer-related coping mechanisms. In fact, most persons with cancer become expert about their own illness and treatment. They know, more or less, what to expect medically, and they learn how to navigate the health care system. They develop the language and the needed skills to manage crisis periods such as the recurrence of disease. In short, cancer survivors learn how to live with cancer.

Eventually, cancer takes on a normal—perhaps a better term would be a “new normal”—rhythm that incorporates all of the changes brought about by the cancer experience. Persons without a personal history of cancer wonder how it is possible to live normally despite cancer, and this attitude is one of the challenges that must be faced.

Fear of Stigma
The disease of cancer still carries a stigma. Despite treatment advances and extended survival rates for many cancers, cancer remains a stigmatized disease, and persons with cancer must contend with societal attitudes, prejudices and discrimination solely on the basis of their cancer history.

The stress of a diagnosis of cancer and its subsequent treatment requires many personal and interpersonal changes. For example, during the treatment phase, there may have been a redistribution of tasks within your family unit and these functions may need to be renegotiated. There also may be significant changes in your relationships with friends and acquaintances. Now that you have been diagnosed with cancer, people you know may respond to you differently. They may negatively stereotype you as a “cancer victim” or believe that your cancer is an automatic death sentence.

Returning to work also may create various stresses. There may be a difference in the way coworkers treat a person who has been absent, even briefly, due to cancer. They may avoid you or isolate you. Also, due to a lack of understanding, ignorance or fear about cancer, many individuals with a cancer history experience some form of employment discrimination such as dismissal, demotion, or failure to get a promotion or new job.

The challenges and tasks of living with cancer are many. Perhaps most important of all these tasks is learning to live with uncertainty while maintaining a functional and optimal level of hope.