Having cancer and going through treatment usually come with some physical and psychological impacts even after treatment ends. Sometimes late effects of cancer treatment appear only months or years later. Survivorship encompasses the range of experiences people have living through cancer and treatment and managing the effects over time, including follow-up medical care and other supports for mental and physical health. Each person’s survivorship experience is unique, but some common concerns include social and psychological wellness, the risk of second cancers and recurrence, and lingering or late side effects of the cancer and treatment.
Here’s what you need to know about navigating cancer survivorship.
Transitioning out of treatment
Many people with cancer find the transition from active treatment to “normal” life on the other side to be emotionally difficult. In fact, many people struggle more psychologically once active treatment has ended than during their treatment for cancer. This might surprise you as well as family and friends, who might expect you to simply be thrilled to be alive and done with harsh treatments. However, it is completely normal to have a wide range of feelings as treatment ends. You might be happy, relieved, grateful, bewildered, overwhelmed, sad, anxious or simply numb. You might feel a combination of things depending on the hour, day or week. All of these reactions are common and something many people with cancer go through.
During cancer treatment, many people enter a kind of fight or survival mode, focusing on getting through each day or phase of their treatment. There are huge emotional ups and downs as you undergo medical tests and procedures and await results to find out if the treatment is working. People often feel surrounded and supported by their treatment team, friends and family, or both through this period. When active treatment comes to an end, it can feel like your support system has vanished (some people refer to this feeling as “care withdrawal”).
You start seeing your treatment team less frequently and friends and family might reach out less once the immediate danger has passed. It’s also common to feel less in control than you did when you were taking part in active treatment. Instead you might feel very uncertain about the future and anxious about the possibility of recurrence. On top of that, you may still be dealing with lasting physical side effects of treatment, like fatigue, sleep problems, pain and discomfort, which can make resuming your previous routines or getting back to ordinary life more difficult than you’d like.
In short, when transitioning out of treatment, your role in relation to the cancer changes and your relationships with the people who’ve supported you often change at the same time. So it’s no wonder that this period can be confusing and difficult. Again, all of these feelings are common and there is no reason to judge yourself if you struggle with the transition. It can be very helpful to access support meant specifically for people who have gone through cancer treatment, and your treatment team should be able to connect you with them. Some options to explore are support groups, one-on-one peer support programs, and mental health counselors experienced in working with people who have been through cancer treatment. If you have a trusted friend or family member, you might also try telling them directly how you’re feeling and explaining how they can best support you as you transition out of treatment. Sometimes people are eager to help once they understand what you’re going through.
Follow-up medical care
Once active cancer treatment ends, it’s very likely you’ll need related follow-up care for your physical health. This can include:
- Regular exams and medical tests to check for cancer recurrence
- Monitoring and managing risk for possible secondary cancers
- Managing side effects of the cancer and its treatment, such as heart issues, neuropathy, lymphedema, etc. Some side effects can show up long after treatment has ended.
- Help with lifestyle changes like avoiding smoking, maintaining a healthy weight, keeping physically active and adjusting your diet (especially if you have developed lactose intolerance or other food sensitivities as a result of chemotherapy or radiation).
It’s important to understand what follow-up care you need and who is responsible for it (your cancer treatment team, your primary care doctor, or other health professionals like a physical therapist, occupational therapist, or dietician). Make sure you know which late side effects are possible from your treatment and who to contact in case you notice them. It’s also important to ensure your primary care doctor knows your cancer history and coordinates with your cancer treatment team to access any medical records and to understand your new overall healthcare needs.
Cancer centers are becoming increasingly aware of the need for coordination and planning once active treatment ends. Your treatment team may walk you through a survivorship care plan that includes summaries of your diagnosis, treatments and test results, information about your schedule of follow up appointments, and guidance about self-care and side effects to look out for. If you’re not offered this plan you can ask for one.
Most people go back to the cancer center where they were treated for follow-up care related to their cancer diagnosis and treatment. There are some specialized survivorship clinics as well, which may be worth seeking out if you need significant long-term care, for example from an onco-cardiologist.
Psychological and social needs
Caring for your psychological health is just as important as caring for your physical health and experiencing a cancer diagnosis and treatment typically impacts both. We’ve already mentioned that the transitional period following active treatment can be difficult for many people. But there are other reasons you might want to seek out psychological support following active treatment. Your emotional life can change in ways that might surprise you and pose challenges. Your relationships with others can change, too. Your work, family, and social life can all be affected. It can be helpful to seek out support to understand and navigate these changes.
Some people with cancer develop post-traumatic stress disorder, or PTSD. Often symptoms start well after treatment ends. Signs of PTSD can take many forms, but it is very common to have feelings of fear, panic, and anxiety around follow-up tests (this is sometimes called “scanxiety”). These might be triggered by the knowledge that a medical test or appointment is coming up or by being near or inside the building where you were diagnosed or received treatment. Some people feel weak, sweaty or nauseated. You might actually vomit. Other triggers can include physical symptoms similar to those that led to your cancer diagnosis. This can be very difficult to deal with, especially if those symptoms are common to other, more minor health concerns (like a cold or flu).
Anxiety and PTSD are common among people who have been through cancer treatment and these symptoms are treatable with the help of a mental health professional. Some people take anti-anxiety medication before follow-up appointments or at other times when they know they will struggle. Cognitive behavioral therapy and other kinds of counseling can help to reduce symptoms over time.
Some people experience long-term, general anxiety and depression after cancer treatment ends. This, too, is treatable with the help of a counselor, ideally someone with experience working with people who have had cancer.
Another experience some people have after cancer treatment is post-traumatic growth. Post-traumatic growth involves a deep and meaningful positive shift in perspective after a serious hardship. For example, after surviving cancer, you might find that your relationships have deepened, minor inconveniences or setbacks in life don’t bother you the way they used to, and you’ve discovered inner strength you didn’t know you had. You might feel that you have a new set of priorities or a new sense of purpose in life. These kinds of feelings are obviously positive, but sometimes they can cause conflict or confusion with others in your life who can’t relate to your new perspective.
Relationships at home, in your social life, and at work or school may also change after your cancer treatment because of other people’s attitudes or assumptions about your experience or adjustments made in routines when you weren’t able to do certain tasks. You might feel unsure how to resume old roles at work or at home, or how to adapt previous roles to new needs, like lingering side effects of treatment. People may start awkward conversations, ask questions you don’t want to answer, or even avoid you because they’re not sure what to say. This can all be challenging to navigate. It can be helpful to think ahead about what details you’re comfortable sharing in what contexts and come up with some standard responses to use, including ways to end conversations politely but firmly when needed.
Over time, some people embrace the term “cancer survivor” and take comfort in sharing similar experiences with a community. They might get involved in fundraisers for research or programs to help support others going through treatment. Other people want to put their experience with cancer and treatment firmly in the past. Some people find terms like “survivor” painful because their cancer is never expected to be fully cured, even if a period of active treatment has ended. All of these reactions, and many others, are normal. How you view your experience with cancer and treatment is up to you.
Psychological and social changes and challenges are a common part of cancer survivorship. Take your mental health as seriously as your physical health and don’t hesitate to seek out peer support programs or groups, or work with a professional counselor or psychiatrist if you need to.