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Survivorship and Support at UTMB Health

About Cancer Survivorship

After a cancer diagnosis, a person's priorities regarding relationships, career, or lifestyle may change. Some people with a history of cancer, often called cancer survivors or survivors, say that they appreciate life more and have gained a greater acceptance of self. At the same time, some survivors also become anxious about their health and uncertain of how to cope with life after treatment, especially when regular visits to doctors stop.

Defining Survivorship

Surviving cancer or “survivorship” can be defined in different ways. Two common definitions include:

  • Having no disease after the completion of treatment
  • The process of living with, through, and beyond cancer

By this definition, cancer survivorship begins at diagnosis. It includes people who continue to have treatment to either reduce risk of recurrence or to manage chronic disease. Sometimes, doctors and nurses use terms to describe the specific period a survivor is experiencing. These can include:

  • Acute survivorship: describes the time when a person is being diagnosed and/or in treatment for cancer
  • Extended survivorship: describes the time immediately after treatment is completed, usually measured in months
  • Permanent survivorship: describes a longer period, often meaning that the passage of time since treatment is measured in years

Pink Breast Cancer Awareness RibbonSometimes, people who have survived cancer consider their close friends and families “co-survivors” because of the experiences they have had in caring for the person with cancer. Others with metastatic cancer don’t feel that the “survivor” label applies to them because they continue to live with cancer every day. No matter how it is defined, survivorship is unique for each person.

Survival Statistics

  • A new study from the American Cancer Society reports that the number of women who died from breast cancer dropped about 40% in the past 25 years, which translates into more than 322,000 lives saved during that time period.
  • The average 5-year survival rate for women with non-metastatic invasive breast cancer is 91%. The average 10-year survival rate for women with invasive breast cancer is 84%. If the invasive cancer is located only in the breast, the 5-year survival rate of women with breast cancer is 99%.
  • It is important to note that these statistics are averages, and each person’s chance of recovery depends on many factors, including the size of the tumor, the number of lymph nodes that contain cancer, and other features of the tumor that affect how quickly a tumor will grow and how well treatment works.
  • The declines in breast cancer mortality rates since 1989 have been attributed to both improvements in treatment and early detection by mammography.

What To Expect

At the end of active treatment, many survivors often have mixed emotions, including relief that their treatment is over, as well as anxiety about the future. After treatment, the "safety net" of regular, frequent contact with the health care team ends.

Some survivors may miss this source of support, especially because anxieties may surface at this time. Others may have physical problems, psychological problems, sexual problems, and fertility concerns. Many survivors feel guilty about surviving, having lost friends or loved ones to the disease. Some survivors are uncertain about their future, while others experience discrimination at work or find that their social network feels inadequate. Find out more about coping with such concerns and learn more about the next steps to take in survivorship.

Fear of Recurrence

Fear of recurrence (cancer that comes back after treatment) is common among most cancer survivors. It may lead a person to worry over common physical problems, such as headaches, coughs, and joint stiffness. It is hard to know what is "normal" and what needs to be reported to the doctor. Discussing the actual risk of recurrence with your doctor and the symptoms to report can often lower your anxiety. Maintaining a regular schedule of follow-up visits can also provide a sense of control. Although many cancer survivors describe feeling scared and nervous about routine follow-up visits and tests, these feelings may ease with time.

Relationships

When active treatment is over, some survivors need different types of support than they had before. Some friends may become closer, while others distance themselves. Families can become overprotective or may have exhausted their ability to be supportive. Relationship problems that may have been ignored before cancer can surface. The entire family is changed by the cancer experience in ways they may not be aware of. Recognizing and working through these changes are needed to help you get the support you need, and some people find that counseling helps. Open and ongoing communication helps with adapting to life and shifting relationships after cancer.

Getting Back to "Normal"

Returning to a regular schedule is a sign of getting back to a normal routine and lifestyle. Many people with cancer who took time off for treatment return to work afterwards, while many others may have worked throughout treatment, and others may not be able to return to work because of the effects of the cancer or its treatment. Most people need their job and the health insurance it provides.

Although many survivors can be as productive as they were before treatment, some find they are treated differently or unfairly. During and after treatment, it may be helpful to anticipate questions from coworkers, and decide how to answer these questions in advance. Coworkers may want to help but not know how. It may be up to you to start the conversation and set the limits. When and how you choose to discuss a diagnosis is a personal decision.

More Information

This content is adapted from Cancer.Net (www.cancer.net), the patient information website of the American Society of Clinical Oncology (ASCO)-- which brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them.

ALERT BAR