Research has begun to address the survivorship experience of women with breast cancer, but until now, all women have been studied collectively, without differentiating the type of treatment they received or are still receiving. In their article in the July 2016 issue of the Oncology Nursing Forum, Flanagan, Tetler, Winters, Post, and Habin set out to study the experience of women specifically with estrogen receptor- (ER-) positive breast cancer and what they felt helped or hindered their experience.

ER-positive breast cancer is the most common form of breast cancer in women older than 45 years. It is usually treated with some combination of surgery, chemotherapy, and radiation. After primary treatment ends, women are prescribed oral, endocrine-based hormone therapy (adjuvant therapy) for 5–15 years to prevent recurrence, during which time follow-up oncology care becomes much less frequent.

In their article, Flanagan et al. explored how reduced contact with the healthcare team impacted women receiving oral adjuvant therapy and the ways in which oncology nurses could offer continued support for women during long-term adjuvant treatment.

Transitioning From Primary to Adjuvant Treatment

Although adjuvant breast cancer therapy has the excellent benefit of improving the risk of recurrence and survival after primary breast cancer, it is also associated with a range of physical and psychosocial symptoms.

  • Cognitive and emotional changes
  • Musculoskeletal and vasomotor symptoms
  • Vaginal dryness
  • Sexual dysfunction
  • Urinary problems
  • Weight gain
  • Insomnia
  • Fatigue

Studies have shown that women struggle to manage these symptoms, particularly at a time when they are transitioning away from primary oncology care. 

Women’s Experiences During Adjuvant Care

Flanagan et al. interviewed by telephone 15 women with stage I–IV ER-positive breast cancer about their experiences with the initiation of oral adjuvant therapy. The women were aged 48–81 years (median = 62.8 years) and all were Caucasian. They identified five themes from the interviews.

Feeling overwhelmed and abandoned despite highly skilled medical care: Because the women were coming from active primary treatment, they reported feeling numb and that they needed a break to allow them to get their lives back. Four of the participants said they chose to delay starting adjuvant therapy for several weeks to three months.

The reason cited for the delay was feeling that initiating treatment was difficult because of the reduced number of visits to their care team. They reported feeling as though they had no one to answer their questions about symptoms and described feeling a void because of the significant reduction in intensity of care and little guidance offered once primary treatment ended. 

Additionally, they cited a need for their oncology providchelers to communicate better with other care providers so that all understood the treatment plan and all of the patient’s health issues, not just breast cancer and its treatment.

Processing the trauma and putting it in perspective: The women said they felt fear and anxiety about their primary treatment that extended to initiating oral adjuvant therapy. They reported not being able to discuss the trauma of primary treatment and feeling as if they had post-traumatic stress syndrome. They cited having little to no support to help them deal with such emotions as they begin oral adjuvant therapy. The women needed to discuss what had happened to them in the past and realign their priorities for the future.

Keeping up the façade while feeling vulnerable: The women described a need to appear “normal,” whether it was to be strong for their family or for their own need to not focus on their cancer and not wanting sympathy. However, they recognized that they actually needed more support as they initiated oral adjuvant therapy. They were frustrated with what they described as a lack of balance between a need to fight cancer and appear strong and a need to have discussions about life’s purpose, personal meaning, and death.

Needing to connect cautiously: Although they like the idea of a support group, the women said they were reluctant to join one because they worried they would want to take care of the others in the group instead of themselves. They wanted ongoing interaction with healthcare experts instead, particularly about what to watch for as far as threats to future health, yet they didn’t want to return to the hospital for ongoing classes nor commit to phone consultations. 

Instead, they suggested a website where they could chat with their providers or patient peers on an as-needed basis. They felt that they could explore vetted information from their providers on their own time.

Moving toward healing and being aware: Many of the women reported a need or actual action to move “toward healing” as they initiated oral adjuvant therapy. They wanted to change how they had been living but were overwhelmed with where or how to begin and were lacking the guidance they desired. They said they were confused by the healthcare team’s mixed message of encouraging them to set new priorities but also continue to work, be involved with family, and live life. They feared the unknown and wanted a nurse who “knew and understood all the complexities” of their health-related issues. 

Implications for Oncology Nurses

Flanagan et al. summarized that nurses need to comprehensively assess and understand the needs of women initiating oral adjuvant therapy and tailor treatment plans, particularly if they are older, self-reported caregivers, taking several medications, or have chronic comorbid conditions. The researchers encouraged replicating the study in a larger, more culturally diverse sample to understand the experiences more fully and whether differences in type of adjuvant therapy and other demographics may affect experiences. They also encouraged additional research to explore ways reducing care gaps and providing ongoing support during long-term adjuvant treatment.

For more information on the experiences of women receiving oral adjuvant therapy for ER-positive breast cancer, refer to the full article by Flanagan et al.

Five-Minute In-Service is a monthly feature that offers readers a concise recap of full-length articles published in the Clinical Journal of Oncology Nursing or Oncology Nursing Forum (ONF). This edition summarizes “The Experience of Initiating Oral Adjuvant Treatment for Estrogen Receptor–Positive Breast Cancer,” by Jane Flanagan, PhD, RN, ANP-BC, Devin Tetler, MS, RN, AGPCNP-BC, Loren Winters, MSN, ANP-BC, OCN®, Kathryn Post, MS, APRN-BC, and Karleen Habin, MSN, RN, BC-CS, which was featured in the July 2016 issue of ONF. Questions regarding the information presented in this Five-Minute In-Service should be directed to the ONF editor at ONFEditor@ons.org. Photocopying of this article for educational purposes and group discussion is permitted.