As patients with breast cancer near the end of their active treatment phase, they often anticipate that the final chemotherapy or radiation session will bring a mixture of joy, relief, and a sense of closure. After months or longer of appointments, tests, medication, and doctors, women eagerly await the day when they will reach the “light at the end of the tunnel.” But the transition into posttreatment life can often be more emotionally fraught than initially imagined. Rather than a clear demarcation between their experience and the start of their new normal, many patients describe the end of treatment as a sense of “being in limbo” as they process what they just experienced. This new phase can bring a wide range of feelings to the forefront, many of which are confusing to the woman whose internal experience feels so different from what was expected. However, the challenges that arise as patients navigate the transition into survivorship are often not addressed. Clinicians prepared for this new stage at the beginning of posttreatment can help patients greatly with timely education, support, and interventions.
Treatment and survivorship are not fixed points on a linear timeline. To better understand what patients may experience following treatment, cancer should be looked at as an ongoing, ever-evolving condition rather than a single event with a defined end. Discussions on the stages of cancer can impact patients’ expectations of what “done with treatment” will look like. Closure is not immediate, which can be at odds with the internal or external expectations. Patients do not immediately absorb the reality of their medical situation and all the changes they have been through into their sense of self and social functioning.1
The Next Unknown
Patients with breast cancer transitioning into survivorship may also be impacted by cultural and media representations of what a breast cancer survivor looks like. Some women strongly identify with the image of the breast cancer warrior or pink power and find it empowering. Others may not. One woman described frustration at what she viewed as the limited understanding of breast cancer survivorship: “They think now that treatment is done, I’ve wrapped up the experience in a neat pink bow and can move on.”
Friends and family may be surprised to find that the patient is dealing with conflicting emotions now that the “hard part” is over. At the same time, the support network she had during treatment may wane. The need for support does not go away after treatment, but articulating to friends and family what is needed as a survivor is often difficult. Patients may verbalize that they don’t want to be a continued burden on a support network that has done so much, which in turn might bring up shame and guilt that they should be coping better than they are.
For many women, the loss of the oncology care team and the transition to fewer medical appointments can be a significant challenge as treatment ends. Often women form strong bonds with their oncology care team, and many women report a sense of safety in the regimented medical oncology routine. Patients in treatment may find comfort in knowing they are doing something, so as treatment stops, anxiety about recurrence often increases significantly. Posttreatment patients wonder what symptoms they should look out for, how to communicate with their medical team now, and how to manage their fears of disease recurrence.
During this uncertainty, the patient is often concurrently navigating re-entry into the workforce and resumption of their familial roles. She may need to go back to work before she feels ready to due to financial or job-security concerns. Family members and caregivers who have taken on increased responsibilities (such as childcare) often anticipate their return to normal, too, as they often have to return to jobs or previous responsibilities as well. Patients verbalize a sense of internalized pressure to get back to functioning at full speed, while regaining the physical/emotional energy needed may take longer than anticipated.