Fear of Cancer Recurrence Pilot Project: Knowledge, Support, Practice & Community

This spring the CHI ran its first Fear of Cancer Recurrence + Progression group.  With 15 wonderful participants, we ran four sessions (once a month), on Zoom. We’re planning many more sessions, starting in the fall.  But first, here are some reflections on our Pilot Project:

• People are amazing! Many of the participants in the Pilot had never joined a group before or had never felt comfortable discussing fears of recurrence or progression with friends, family or health care providers.  People at the end of active treatment or embarking on ongoing lifelong treatment can feel invisible or isolated in their concerns.  In the Pilot, they simply showed up; with a generous capacity to listen and a willingness to extend belonging to each other.

• It became clear that while the definition of fear of cancer recurrence is the “fear, worry, or concern relating to the possibility that cancer will come back or progress” (Lebel et al., 2016), it can play out in different ways for different people. There can be an unsettling anxiety, feelings of loneliness and ruminating thoughts (especially at night), notably worse with upcoming scans, or an unrelenting, ever-present pall, an underneath-everything-else private worry.  It can feel like your “not yourself” or “not really present” to the fullness of life.  And out of nowhere, the fear comes roaring back.

• Yet, when considered with compassion, fear of recurrence and progression makes sense. After a shock (most cancer diagnoses are shocking) and the flurry of appointments, decisions and treatments, the nervous system has learned to be very vigilant and protective.  Anxiety and worry often result.  During our four sessions, all of our practices (movement, breath, visualization, meditation) begin with acknowledging each person’s lived experience with cancer, the intelligence of the nervous system, and turning toward or befriending resulting anxiety. Instead of banishing fear, we instead feed it with good nourishment for body, mind and spirit, through practice and in community.

• It’s often easier to move first, rather beginning a practice with meditation, breath or visualization. Movement (especially gentle novel movement) can reassure the nervous system, informing it that this very moment is safe enough.  From this safe-enough state, much of the tension from anxiety and stiffness from lack of movement (think of the immobility in chemo infusions, radiation beds and post-surgical recovery etc.) can finally be released.  Somatic and mindful movement have a unique way of calming the body, decreasing inflammation and changing mood (Lucas et al., 2018).

• Many experiences were common in our group, especially this one: everyone expects you to be your normal, pre-diagnosis self (after all, you look great!). The reality is, people change through their cancer treatment, physically, mentally, emotionally, socially and spiritually.  They often change priorities and perspectives, given what they have been through. Sometimes they want to live wilder (bucket list etc.), sometimes they can feel more vulnerable and sensitive, aware of the fragility of life. They can be differently discerning, some wanting to bubble the experience, some wanting to carry it with them in some, more healthy way. Uncertainty reigns.  Cancer can put people out of step with their families, friends and colleagues; they have endured something unique and profound.  Often, they feel lonely, with their loved ones unable to acknowledge their lived experience.  Their experience with cancer doesn’t feel like it’s over, even if the treatment is.  Something lingers.  And this inner reality feels misunderstood or unmet by well-intended family and friends.

• Grief wants to be heard. Whether it is the loss of a pre-cancer life or a pre-cancer identity, or the various losses incurred during treatment, this experience wants to be acknowledged, grieved and carried.  In a culture that is quite grief illiterate, others have difficulty being with this “negative” attitude.  In reality, compassionate accompaniment, simply “being with” whatever emotions arise can profoundly shift the heaviness, and grief can be experienced in its greater width, that includes sadness, but also perspective, awe and love.

• It’s a relief to talk about the fear of death. Even when a cancer diagnosis is not considered serious or terminal, the underlying fear of death can surface strongly, even after successful treatment. In a culture that is death phobic, considering one’s mortality can be seen as morbid and more “negative thinking”.  Conversely, practicing with the idea of one’s mortality can strongly decease fear of death (Anālayo et al., 2022; Dor-Ziderman et al., 2025; Moon, 2019; Park and Pyszczynski, 2019; Rubenstein Fazzio, 2026).   Awareness of mortality is a tender practice, best in short doses, with lots of reassurance for the nervous system and in good company.  Surprisingly, the underlying fear of dying seems to be a profound social connector – people in the group were thankful to finally be able talk about this, with other’s who understood.

• Self-compassion is the most difficult practice. Of all the meditation possibilities for FCR+P, this one seems the most challenging and yet, one that can profoundly shift grief (Jiang et al., 2026), instill purpose (Gentry et al., 2025) and help in self-regulating positive health behaviours (Biber and Ellis, 2019).  Being compassionate with our fears of the future and gently coming back to the present moment is a foundational practice in studies of FCR (Hall et al., 2018), and it remains one of the most useful and challenging.

• Even in a group that comes together to practice, it is hard to find time to practice all the practices! With this in mind, our next group will offer more time and flexibility: we have added another monthly practice-only session, for newcomers to the program and for those who have already attended the program and want to continue practicing.