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Finding a New Normal after Esophageal Cancer

by Penny Damaskos, LCSW, OSW-C

For over two decades, celebrities have entrusted Coping® to tell the world about their personal experience with cancer. We are proud to present this exclusive interview from our archives and hope that it will inspire and encourage all who read it. This article was originally published in Coping with Cancer magazine, November/December 2007.

Photo by Cancer Type

Survival rates for all cancers are on the rise, including those for people diagnosed with esophageal cancer. Esophageal cancer survivors face many of the same quality of life issues that all cancer survivors face: the need to make adjustments in the physical, psychological, and practical realms.

In the physical realm, esophageal cancer survivors cope with physical changes brought on by the cancer treatment that can range from complete hair loss to body changes. Because surgery often includes stomach reduction, many esophageal survivors have trouble with digestion and need to slowly re-acclimate to eating certain foods again. For many survivors, this can be both confusing and frightening. It is important to speak with your medical team to develop a nutritional plan that will help facilitate the reintroduction of foods to your diet and restore a sense of normalcy.

Additional physical adjustments faced by esophageal cancer survivors include changes in sleeping patterns and positions. Surgery may result in an inability to lie flat on their backs, and instead they must lie on their stomachs in order to sleep comfortably. Others still must sleep in an elevated position to reduce acid reflux back into the esophagus.

The psychological realm post-treatment can be complex. Most cancer survivors verbalize fear of recurrence as their chief concern. As with many survivors, the specter of recurrence is a constant presence, but with time and talking with others (survivors, medical team), people learn to manage this fear.

Author of Article photo

Penny Damaskos

It is often a surprise to people that they feel an increased sense of anxiety after treatment ends rather than the expected elation. For many survivors, the post-treatment time marks a period where the scrutiny by the medical team stops, leaving them at a loss. It is often once treatment is complete that the understanding of the cancer experience happens. Survivors find themselves piecing together what happened and begin to understand the multiple changes the diagnosis can have on one’s self concept and identity.

This post-treatment phase can include questioning the existential and/or spiritual meaning of life. For many people, this can be a time to initiate life changes, such as leaving a job that was unrewarding for one that is more fulfilling. For esophageal cancer survivors in particular, smoking is a risk factor, so to quit is a lifestyle change that can cause stress to the individual and the family. Smoking can be a source of support and a coping mechanism, and not to have access to that can be a difficult transition.

It is important to know that whatever the changes and transitions a cancer diagnosis can precipitate, there are counselors and assistance for whatever method works for the individual. Short-term counseling can help people focus and work through issues related to the cancer diagnosis and treatment. For others, changes in diet and lifestyle help them to regain a sense of equilibrium and stability, providing the foundation for a better quality of life.

Developing new coping strategies can result in a renewed sense of control during a time that is usually marked by loss of control. Many survivors are increasingly using complimentary approaches to managing symptoms and side effects through meditation, massage therapy, yoga, and acupuncture. It is important to consult with your medical team when using these approaches.

The post-treatment time can also mark a shift in relationships, providing the opportunity for a new level of intimacy with loved ones and family members. Many esophageal cancer survivors report a sense of increased isolation – this is a normal reaction to having had cancer and undergone treatment. For many people, the sense of what is “normal” shifts, leaving many survivors wondering how to regain emotional stability and resume a familiar level of activities. These changes can affect sexual functioning, self-esteem, physical activities, relationships with family and friends, work schedule and productivity, and other important quality of life issues. Many people participate in psychoeducational support groups and/or seek counseling to adjust to the physical and emotional changes brought on by treatment.

It used to be that simply surviving the illness was both the emphasis and expectation for the cancer survivor. This is no longer the case. As more people survive cancer, there is an expectation that they will return to a life with a renewed sense of self and energy that allows them to engage fully in their world.

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Penny Damaskos is coordinator and clinical supervisor of the Post-Treatment Resource Program in the Department of Social Work at Memorial Sloan-Kettering Cancer Center in New York and coauthor of 100 Questions & Answers About Life After Cancer: A Survivor's Guide.

This article was published in Coping® with Cancer magazine, November/December 2007.