Finishing treatment for lymphoma or Chronic Lymphocytic Leukemia (CLL) is a huge achievement. You may have been told you are in remission, have had complete metabolic response or that there is no evidence of disease. All these things mean the treatment worked and you do not need treatment.
But, while some people are completely cured from their lymphoma, many others know there is a chance the lymphoma or CLL may come back at some point in the future and need more treatment.
Fear of the lymphoma or CLL returning is very normal and many people experience this. This page will provide an overview of what we have learned from patients after treatment, and provide practical tips on how you can manage fear of return.
What is fear of recurrence?
Fear of recurrence is the worry or fear you may have after treatment finishes. The chance of your lymphoma or CLL coming back (relapsing) can cause fear, stress, anxiety and uncertainty. You may find yourself questioning every cough, sneeze, pain or other symptoms as a possible sign of the lymphoma relapsing.
No matter what results you get from your doctor that offer reassurance that you have been cured, are in remission or have no signs of the lymphoma left in your body, you may still find your mind wondering to every “worst case scenario” or doubting the results you’ve been given.
Is fear of a relapse reasonable?
It is very normal to have a fear of the lymphoma returning. Some people have reported feeling betrayed by their body because of their original diagnosis of lymphoma. We are so used to the way our body works and trusting in its ability to keep us well, that a diagnosis of cancer can feel like you’ve been let down by your own body and can no longer feel safe with it or trust it.
You may feel reluctant to make big plans like planning a holiday or other beg event, or fear going back to some of your pre lymphoma activities.
It is normal after such a betrayal to have doubts and fear that the same thing may happen again. And, we know that some lymphomas are likely to relapse and need more treatment. This is especially true for indolent (slower-growing) lymphomas, but can also happen with some aggressive lymphomas. So fear of relapse is reasonable.
However, if the fear prevents you from enjoying life, planning activities or affects the quality of your life, you need to seek help. In some cases, this fear can result in anxiety or depression and need treatment.
Talk to your GP
Talk to your GP (local doctor) about how you are feeling. They can do a mental health plan which can help you plan how to reduce the impact the fear has on your life and help you gain some control over the fear. Everyone who has ever had cancer should have a mental health plan, so there is no need to feel embarrassed or worried about talking about these things.
Lymphoma care nurses
You can also reach out to our lymphoma care nurses for support. They can provide practical information and advice, and let you know of different support services that may be able to help. You canfind there contact details by clicking on the Contact us button at the bottom of the screen.
What is “Scanxiety”?
Scanxiety is a play on words that refers to the anxiety you may feel in the lead up to, during, after you have scan or other test. The scan may be to stage our lymphoma, check how well your treatment, has worked, or to check for signs of relapse.
You may even have a scan or test for something completely unrelated to your lymphoma, and still feel anxious that it might show your lymphoma has returned.
The phrase ‘scanxiety’ is often used among patients in survivorship. It relates to the anxiety and stress experienced before or after follow-up scans and blood tests. It is important to know that both ‘scanxiety’ and fear of recurrence are normal feelings after treatment. These feelings generally reduce in intensity over time.
Practical tips to manage fear of cancer recurrence
- Discussing your fears and concerns with family members or friends who can understand your feelings
- Talking to a counsellor, psychologist or spiritual care worker
- Practising meditation and mindfulness techniques, especially in the days leading up to and immediately following scans and appointments
- Exercising regularly and making generally healthy lifestyle choices
- Continuing with current hobbies, or getting involved in new activities which challenge you and allow you to meet new people
- Attending all your follow up appointments and if possible, bringing a support person with you.
- It can be helpful to write a list of topics or concerns that you would like to discuss with your doctor and take them with you to your follow-up appointment.
- Participating in regular cancer screening programs for breast, cervical and bowel cancer
- Ask you medical team to have your follow up review as soon as possible after the scan so you do not wait too long for a follow up call
- Minimising the use of the internet to research new symptoms or concerns
Will this fear ever go away?
It can also be helpful to know that many people report that fear of recurrence generally reduces over time as their confidence builds. If you feel that this is not the case for you, it is encouraged that you speak about this with your GP or treating team about what other options may be helpful for you.
Every person who receives a Lymphoma or CLL diagnosis has a unique physical and emotional experience. What may ease the stress and anxiety for one person may not work for the next. If you are struggling with significant levels of stress and anxiety at any stage in your experience, please don’t hesitate to reach out. The Lymphoma Nurse Support Line is available for additional support as needed, alternatively you can email Lymphoma nurses.
