Cancer can impact your life in many ways. While a new diagnosis can shock you, over time you may feel a sense of comfort with your treatment plan and medical care. That sense of comfort can dissipate following treatment. The post-treatment phase is often called “survivorship” and it may surprise you to know that this phase requires additional adjustment.
The end of treatment can be exciting with visions of moving on with your life, but you might also be feeling fear, anxiety, or sadness. As discussed in this Institutes of Medicine (IOM) report, survivorship — or transition out of treatment — creates new complexities for cancer survivors and caregivers. Survivors’ concerns can be physical and emotional. The long-term impact of cancer can be challenging for others to understand.
What is survivorship
Survivorship is generally thought of as the timeframe that follows active treatment. It is the phase in which one is living and functioning after treatment has ended. The term “survivor” may not resonate with everyone.
Once treatment is complete, there may be pressure to return to life as you knew it before cancer. There may be an expectation to return to work, resume duties at home, and continue with relationships as they were before the cancer diagnosis. It can feel both exhilarating and overwhelming to attempt to return to your old life. While friends and family are celebrating, your excitement or gratitude may be accompanied by feelings of loss, loneliness, and fear. For many, this is a time of adaptation that includes:
- Acknowledging and managing the emotions that arise following the end of treatment
- Adjusting to long-term and late effects of cancer
- Locating credible resources around survivorship
- Attempting to return to the pre-cancer activities
- Planning for medical follow up
The physical changes experienced during survivorship can vary greatly depending on your treatment and cancer type. Completion of treatment unfortunately does not always mean your body will be back to its pre-cancer state. The intensity of some cancer treatments can take a toll on your physical and emotional health so healing may take time.
Although some physical changes that resulted from your cancer treatment may be permanent, many will fade over time. Improvement of physical strength and lessening residual side effects can take months and sometimes years to disappear. Your oncologist can provide insight into your specific recovery expectations.
A Survivorship Care Plan is a physical or electronic document that your oncologist/care team compiles after treatment completion that helps summarize your treatment process and provides guidance for follow-up appointments and monitoring. If you do not have a clear plan or have questions about what you should be monitoring for moving forward, request this document from your care team.
Monitoring your current health status post-cancer diagnosis can cause anxiety. Pay attention to your body and share concerns about what you are experiencing with your treatment team. An Iris nurse can also help provide reassurance or guidance on changes or concerns you may be experiencing.
There are many contributors to the emotional experience of completing treatment. Read on about some of the most common examples.
Fear of recurrence
Fear of recurrence during this time is common. Survivors may worry that any medical concerns that arise could be a sign of cancer returning. Become knowledgeable about the likelihood of recurrence as well as ways you can reduce the potential risk:
- Attend all follow-up appointments
- Utilize your Survivorship Care Plan at all medical appointments
- Be an active survivor by participating in follow-up visits and decision-making
- Eat healthily
- Engage in physical activity
- Eliminate stress as much as possible to care for your emotional health
- Get adequate sleep
Ambivalence about celebrating the end of treatment
Ending treatment can be an exciting time for you and your support network. Many patients feel ambivalence during this time, as it may feel as if there is an expectation to return to normal and put cancer behind them. You can address these expectations by sharing your feelings with family and friends, so they know how to best support you.
You may find your needs are best met by being transparent and expressing your needs to loved ones at this stage. If you have difficulty communicating discomfort, write a note or an email to your loved ones. Some patients celebrate their end of treatment while others do not. Alternatives to celebrations include:
- Encouraging giving donations to a meaningful charity
- Encouraging family and friends to volunteer with you to give back to a local organization
- Forming a team to run or walk in a race that supports a cancer organization
- Organizing a “gratitude event” where you can thank the people who supported you.
Changing relationship with the care team
This can be difficult as this is a time when you may feel “unprotected from cancer.” You may feel as if you have lost your lifeline by moving away from the treatment. Some patients grow close to their medical team and find it difficult to no longer see them frequently. Ways to address this concern include:
- Discussing options for ongoing support at your cancer clinic. There may be options for short-term supportive counseling or transitioning to a support group for survivors.
- Connecting with your natural support system (friends, family, neighbors). This could be a good time to develop deeper bonds with your loved ones.
- Visiting your treatment team or sending them notes on occasion to stay connected.
- Volunteering at a cancer hospital or support organization to give back.
Integrating cancer experience into your identity
This can be beneficial as you attempt to adjust to life after treatment. Some patients develop a new identity that may impact their well-being. You may identify as a survivor, a person who has had cancer, a patient, or something completely different.
- Many patients feel cancer is a part of their story but not who they are as individuals. Some find it helpful to consider cancer as a small piece of a larger puzzle of life — not giving it the power to be at the center of everything. Consider these ways to integrate the cancer experience into your identity:
- Decide what language best describes your experience with cancer
- Reflect on how your cancer has impacted how you want to spend your time
- Process your cancer journey with a mental health professional
After treatment, it’s common to experience changes in existing relationships. Many patients feel as if cancer changed their outlook on life, their priorities, and their interests. Those around you may notice the change but not know how to address it. Sometimes the physical changes of cancer can cause you to feel reluctant to create new intimate relationships. There are several ways to deal with relationship challenges:
- Consider what has worked in the past when strengthening relationships.
- Share your feelings with trusted loved ones.
- Allow time to adjust. It can take time to recover from the mental and physical scars of cancer.
As you enter survivorship, you may feel misunderstood about what you have gone through or why you are not able to bounce back. You may feel as though you have drifted away from those with whom you were once close to because they don’t understand how you feel. Some suggestions for strengthening others’ understanding of your situation include:
- Joining a support group with other survivors who may better understand how you feel.
- Look for creative ways to cope, like writing, journaling, or doing therapeutic art projects.
- Lean into your faith or spirituality when feeling frustrated.
- Be open and honest about how you feel and the type of support you would like.
More resources for navigating survivorship
Interested in learning more about how to navigate life after cancer treatment? Here are some top resource picks from the Iris Care Team:
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Reviewed by the Iris Clinical Editorial Board
This article meets Iris standards for medical accuracy. It has been fact-checked by the Iris Clinical Editorial Board, our team of oncology experts who ensure that the content is evidence based and up to date. The Iris Clinical Editorial Board includes board-certified oncologists and pharmacists, psychologists, advanced practice providers, licensed clinical social workers, oncology-certified nurses, and dietitians.