Kathleen Cowan was diagnosed with breast cancer 14 years ago.
She was in remission for nine years, until the doctors saw it came back at one of her regular check-ups. The cancer had swiftly spread into all her bones except her hands and feet. During the last four years, she’s taken targeted hormone therapy drugs. Now, she’s doing chemotherapy.
“When metastatic disease hits, all those lofty ideas and goals that you have about how you can handle stress get put to a whole new test,” Cowan said.
Cowan, who lives in Denver, joined a University of Colorado Boulder pilot study testing a new writing therapy to help late-stage cancer patients cope with their diagnosis. She said the writing therapy in the study helped her with a fear of dying and a fear of lack of control.
“There’s so much information coming at you that your mental health just takes a beating. It just does,” Cowan said. “You don’t know where to turn, who to turn to, what the ways are to help yourself out with it and that’s what the study gave me.”
Joanna Arch, a CU Boulder professor in psychology and neuroscience, developed a new writing-based therapy for adults with late-stage cancer who experience elevated trauma symptoms or elevated fears of cancer progression.
“I had hoped that the intervention would be beneficial, but I was surprised by just how beneficial it was,” Arch said.
Participants explore their deepest fears about cancer in the first session of five. They name their fears in writing, discuss it with interventionists and identify a top fear. They also identify a worst-case cancer scenario.
A worst-case scenario could be saying goodbye to kids or loved ones, abandoning a pet or being on their deathbed in hospital. They might be afraid of developing physical disabilities or that someone, like a child, finds their body and is traumatized.
In the next two sessions, the participants write about their worst-case scenario using a beginning, middle and end. They write in the present tense, use their senses and include their deepest feelings and thoughts.
“Thanks to advancements in cancer treatment, we have a rapidly growing population of adults in the U.S. and worldwide that are living increasingly longer lives with advanced cancer,” Arch said. “And so they’re living longer, but they’re also living in the face of tremendous uncertainty about the future.”
The final two sessions are coping writing. They consider the likelihood of that worst-case scenario happening. If it’s likely, they write about how they can decrease the impact of the negative scenario. If it’s unlikely, they write about why it is unlikely, what is more likely and how to cope with it.
“We saw large drops, large and significant declines, in cancer-related trauma symptoms as well as in fear of cancer progression and recurrence,” Arch said. “We saw large drops also in depression and hopelessness about cancer and fatigue. We saw increases in self-compassion and forms of mindfulness and in their perception that they were making progress in valued directions in their life, which was really exciting.”
Through the study, Cowan learned breathing techniques and how to ground herself in her senses when anxiety arises. When she feels herself starting to spin out, she has tools to help herself. She’s learned to let go of the need to be in control.
“There’s a victory piece in that resignation,” she said.
Pia Banerjee, the American Cancer Society’s cancer innovation and transformation director, said the study addresses a significant need in cancer survivors. The fear of cancer progression can reduce their quality of life, cause increased emotional distress and physical symptoms like increased fatigue.
“We want to do everything that we can to reduce the distress and the burden that is put on cancer survivors, and this (study) is certainly one way we can approach that problem,” she said.
Cowan said the main piece lacking in cancer care is a whole-patient approach that includes mental health. Treating cancer is only one part of treating a cancer patient.
“It’s a major piece, but it’s not the only thing we go through,” she said.
There were 29 participants in the pilot study with Stage III or IV cancer or incurable blood cancer. There were 25 people who completed all five sessions.
“The results are promising, but it will be great to see more participants, longer-term outcomes and applications to other types of cancers in the future,” Banerjee said.
Arch applied for funding to conduct a larger, more controlled clinical study to see if the results can be replicated.
“The ultimate goal of our work is to reduce suffering and increase quality of life for people living with cancer and other serious diseases,” she said.
