Psychological Impact of Lymphoma
In the 2020 and 2022 surveys, over three-quarters of patients reported personally experiencing in the last year one or more of the following due to their lymphoma diagnosis: anxiety, body image concerns, changes in relationships, depression, fear, isolation, loss of self-esteem, and/or post-traumatic stress disorder.
Key Takeaways
- Research has confirmed the 12-month prevalence rate for any psychological disorder is significantly higher in patients with cancer compared with the general population.
- Issues like fear, anxiety and depression have been proven to have negative impacts on quality of life, healthcare service use, adherence to cancer treatment and follow-up recommendations, and in some cases, overall survival.
- The psychosocial and quality of life needs of patients with lymphoma remain understudied which is why research that is conducted through the GPS is so critical, it helps identify patients most likely to develop issues and require support, as well as help determine the best interventions to help patients cope
Understanding the Psychological Impact of Lymphoma
Lymphoma Coalition collaborated with Patient Story to create a series of short videos that explore the psychosocial challenges faced by people living with lymphoma, highlighting key emotional and psychological themes.
These videos feature perspectives from Sara Beattie, clinical psychologist; Eugene Bernie, clinical nurse specialist ; and Jonathan Clark, patient advocate. Together, they share insights into the often-overlooked emotional realities of a lymphoma diagnosis, and the importance of supporting mental wellbeing as part of holistic care. From navigating fear and uncertainty to supporting care partners and communicating with medical teams, their perspectives shed light on the importance of addressing the full experience of the disease—not just the clinical aspects.
This series builds on LC’s broader work around Honest Talk and the importance of open dialogue across the lymphoma experience. These videos can be used by patients, caregivers, and healthcare professionals to spark meaningful conversations.
Jonathan’s Story: Navigating Lymphoma Relapse, CAR-T Treatment, and Remission
CAR-T & The Patient Experience – Interview with Jonathan, Patient Advocate
Understanding the emotional and psychological impact of CAR-T therapy is just as important as managing the physical aspects. In the videos below, Jonathan Clark shares his personal reflections on the psychosocial challenges he faced.
His honest insights offer a valuable perspective for others navigating the CAR-T journey, including what he wishes he had known in advance and the parts of the experience he wasn’t fully prepared for.
Fear of Cancer Recurrence
Fear of cancer recurrence (FCR) is defined as fear, worry or concern relating to the possibility that cancer will come back or progress.
FCR is among the most commonly reported psychosocial issues for cancer survivors. It affects people with all types of cancer, and it may continue long after treatments are completed.
Fear remains the main issue for patients each time the survey is conducted, whether it be described as fear of cancer relapse or recurrence (FCR) or fear of progression (FOP). The recent LC GPS conducted in 2022 reported that, 50% of patients indicated they had FCR and almost half said they experienced FOP.
Fear of cancer recurrence is a unique and significant mental health issue. It can impact an individual’s quality of life and is associated with anxiety, depression and isolation. FCR can also hinder the ability to plan for the future.
FCR present itself in varying levels of severity:
- Mild FCR – Occasional thoughts about cancer with peaks of anxiety that are resolved after a few days. These occasions are triggered by external factors like follow-up medical appointments.
- Moderate to severe FCR – More frequent thoughts about cancer without external triggers (one or more time per week), a perceived inability to control these thoughts, and a strong feeling of related distress.
While evidence-based strategies are not yet widely available, in recent years there have been many studies evaluating FCR interventions for cancer survivors. Interventions that help manage FCR include:
- Being mindful
- Addressing fears
- Managing uncertainty
- Gaining control
- Improving patient-healthcare provider communications
- Handling stress through counselling
Patient Perspective: Watch Guy Tavori, a social worker and lymphoma survivor speak about fear of relapse. Talking about fear of relapse can empower patients and help build confidence.
Nurse Perspective: Watch Mairead Ni Chonghaile speak about the Fear of Cancer Recurrence (FCR) at the Haematology Nurses & Healthcare Allied Professionals Group Conference (HNHCP).
To help patients understand and cope with the impacts of FCR, the following resources have been created.
