This section was reviewed and updated by the contributor, 01/2019
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 therapy 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 the long-term side effects of treatment. For example, a person who received a medication that may affect his or her bone density needs to understand that it is important to monitor bone health and take appropriate steps to prevent significant bone loss.
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 treatments they received. 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 concerns after completing treatment for cancer and important to feel supported and accompanied in this journey.
Q: How does a cancer diagnosis affect a person’s family, friends, and caregivers?
A: Cancer affects not just the individual receiving treatment, but the entire family unit. Caregivers and well-wishers help support a patient while they are receiving cancer treatment. But their love, support, and worry don’t end there. Caregivers may also need emotional support.
Q: What should patients and doctors discuss during the last few appointments?
A: The last few appointments should be structured to allow time to review the treatment received and to discuss what comes next. The needs of patients vary considerably. 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. Other patients use these visits to have deeper conversations about their prognosis, seek advice on how to manage side effects, or get referrals to supportive services. It is often the case that a patient may have lost contact with their primary care physician. So these visits also serve as a reminder to address the important issues of health maintenance and make sure that there is proper follow-up for cancer and other health-related problems.
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. It should also clearly state the proposed schedule for follow-up visits and recommended testing to monitor the person's recovery.
Another very helpful resource is a support group. It allows survivors to share experiences and advice and receive support from individuals who are outside their circle of family or friends.
Meanwhile, some may find it useful to look for more information about their specific type of cancer or information on coping with cancer using web-based materials. Others may turn to literature, hobbies, or spiritual advisers 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 a medical oncologist at Stanford and the Editor in Chief of Cancer.Net.