This section was reviewed and updated by the contributor, 12/2020
Watch the Cancer.Net Video: Survivorship: What Happens After Active Treatment Ends, adapted from this content.
As people complete their cancer treatment, they may experience a range of emotions. They may be relieved that treatment is over but worry about the future. In some ways, this transition is one of the least understood aspects of the cancer experience. Here, Cancer.Net talks with Lidia Schapira, MD, about coping with the end of active cancer treatment.
Q: What medical concerns do patients have right after treatment ends?
A: We hear from many patients that the time after completing active cancer treatment is a time when they feel ‘unsettled’ and worry about an uncertain future. Some may even feel anxious about the possibility that the cancer could return and worry they may not be doing enough to catch any signs early enough. It is also important to note that many patients still have unpleasant symptoms related to their treatment for months or even years after treatment ends. Unfortunately, it is common for patients to experience fatigue, difficulty sleeping, problems with memory, persistent pain or tingling from neuropathy, and emotional distress.
People often want to know what signs to look for to detect a cancer return, or recurrence, as early as possible and to recognize and treat the long-term side effects of their specific cancer treatment. For example, a person who received a medication that may affect their bone density needs to understand that it is important to monitor bone health and take appropriate steps to prevent significant bone loss. Another example is when a person with a new physical symptom or disability needs help from experts in rehabilitation medicine.
Q: What are some of the emotional concerns patients have once treatment ends?
A: These include worries about cancer recurrence, one's identity and future, and dying young or leaving things undone. Some patients may also suffer from poor body image or low self-esteem because of the treatment they received and changes it caused. They often need help to learn to accept their new body.
Q: How can patients cope with these concerns?
A: The first step is to recognize one’s fears and worries. The next step is to find a way of dealing with these worries. Information and education are essential to regain some control. Sharing one’s fears and worries with loved ones, a support group, or seeking professional help can and will bring relief. It is normal to have many concerns after completing treatment for cancer and important to feel supported and accompanied in this journey.
Q: How does cancer affect a person’s family, friends, and caregivers?
A: Cancer affects not just the individual who received the diagnosis, but the entire family unit. Caregivers and well-wishers help support a patient during cancer treatment, and their love, support, and worry will continue after treatment as well. This means they may also need their own emotional support during this time.
Q: What should patients and oncologists discuss during the last few appointments during the treatment period?
A: These last few appointments should be structured to allow time to review the full cancer treatment received and to discuss what comes next. Needs of individual patients vary considerably. For example, some patients prefer to race through treatment without asking questions and then need and deserve an opportunity to go over what just happened to them and confirm they have a clear understanding of what will follow.
At some point after cancer treatment is complete, a patient's main medical care may eventually move back to their primary care physician. Cancer survivors often say they feel lost in this transition. I recommend each patient takes time with their oncologist to clarify the follow-up schedule of visits and tests recommended for the future. This helps make it clear who will lead each part of their survivorship care and what to expect.
Patients can also use these visits to have deeper conversations about their future health, seek advice on how to manage side effects, or get referrals to supportive services. These visits may serve as a reminder to address the important issues of maintaining other areas of their general health. Overall, the goal of these discussions is to make sure that the patient has proper follow-up for their cancer-related and other health-related problems and that the patient knows how their primary care physician will be involved.
Q: How else can survivors prepare for life after treatment?
A: Survivors can ask their oncologist for an end of treatment summary that outlines the original diagnosis, including the cancer type, stage, and the treatments received. These details will be important to future health care providers throughout their lifetime. This information should also clearly state the proposed schedule for follow-up visits and recommended scans and other testing to monitor the person's recovery, also called a "survivorship care plan."
Another very helpful resource is a support group. It allows survivors to share experiences and advice and receive support from individuals who have had similar experiences and who are outside their usual circle of family or friends.
Meanwhile, some may find it useful to look for more information about survivorship after their specific type of cancer or information on coping, using web-based materials such as those available on Cancer.Net. Others may turn to literature, hobbies, or their faith to help them move forward. The important message is that life may be forever changed by the experience of having cancer, and those changes deserve careful attention and respect.
Q: Is there anything else you would like to add?
A: I am often impressed by the enormous expressions of gratitude I hear from cancer survivors. Many patients speak of feeling moved by expressions of kindness they received from people they barely knew and how much these moments of compassion sustained them during difficult times. Many cancer survivors want to give back, and you will find them volunteering or acting as advocates at cancer clinics and philanthropic organizations.
It's also important to recognize that many cancer survivors face an uncertain future and feel unsettled. We can listen and partner with them, letting them know they are not alone.
Dr. Schapira is the Director of Cancer Survivorship at the Stanford Comprehensive Cancer Institute and the 2015–2021 Editor in Chief of Cancer.Net.