A breast cancer diagnosis introduces immediate, profound changes to a woman’s life. Everything from focusing at work, to choosing what to eat, to engaging in intimacy is overshadowed by uncertainty and fear, right at the time that she needs to make important decisions about her treatment.
Fortunately, cancer care teams have access to many resources available to their patients both in the hospital and in the community to help guide and support them and their loved ones through the physical, emotional and mental journeys they must travel during treatment. Some of these resources include:
- Hospital-based support groups
- Local support groups
- Awareness and fundraising events
- Online forums and social media groups
Combined with these resources, the flurry of activity required to undergo treatment while managing work, home, family, finances and all the other aspects of life can keep emotions manageable—or even suppressed—during the 6 months to a year or more that treatment lasts.
After treatment ends, however, many women find the sudden quiet to be unsettling. While it is a happy time, the end of treatment opens up a new set of challenges for survivors. According to Renea Valea, M.S.W., L.C.S.W., clinical social worker with Carilion Clinic Palliative Medicine, common survivors’ concerns include:
- Fear of being a burden to their family
- Fear of recurrence
- Fatigue/loss of strength
- Fear of the future
- Sleep disturbances
- Sexual dysfunction
- Difficulty making long-term plans
Traditional support groups for cancer patients do not always address those ongoing issues.
More than 3.1 million U.S. women are living with a history of invasive breast cancer. Each of them is in a stage of survivorship that encompasses a range of experiences and trajectories defined by the American Cancer Society (ACS) as:
- Living cancer-free for the remainder of life
- Living cancer-free for many years, but experiencing one or more serious, late complications of treatment
- Living cancer-free for many years, but dying after a late recurrence
- Living cancer-free after the first cancer is treated, but developing a second cancer
- Living with intermittent periods of active disease requiring treatment
- Living with cancer continuously without a disease-free period
“Even cancer-free survivors must cope with the long-term effects of treatment, as well as psychological concerns such as fear of recurrence,” states the ACS report (pdf). “Cancer patients, caregivers and survivors must have the information and support they need to play an active role in decisions that affect treatment and quality of life.”
Catherine Hagan, B.A., R.N., M.S.N., C.B.C.N., is an advanced practice nurse with Carilion Clinic’s Breast Care Center. She facilitates a support group for cancer patients and recognized a need for something similar for survivors. Carilion’s annual survivor retreat grew out of that recognition. Now in its seventh year, the weekend retreat allows survivors to tell their story, bond through artistic creation and physical challenges like a ropes course and talk with providers who are involved in cancer care.
“Survivorship is an ongoing process and this retreat extends their support network,” she said.
Carilion has also developed a series of occasional lunch-and-learn events for survivors and a friend or family from their support networks. These mini-retreats also include both educational and creative elements.
Like grief, loss and other emotional processes, the survivorship journey does not follow a straight line. Through her work with survivors, Valea addresses long-term psychosocial and physical problems that include:
- Anthracycline-induced cardiac toxicity
- Anxiety and depression
- Cognitive function
- Menopause-related symptoms
- Sexual function
- Sleep disorders
Some people don’t want to reach out when they first finish their treatment and others may seek out support for a limited time. Some women find a new identity and sense of purpose in survivorship.
“I don’t think there is a time limit to how long people need that support,” said Hagan.
She encourages survivors who feel reluctant, lonely or unsupported to find out what their hospital or local breast care center offers in terms of financial, emotional and educational support.
“Knowledge is power, and often when one knows that there are resources available they may be more apt to reach out for them,” she said.
Carilion Clinic’s breast cancer survivorship program is made possible largely by the support of the Carilion Foundation. To contribute, visit CarilionFoundation.org.