The periods before and after a person is told they have the disease tend to produce the most uncertainty and is coupled with a high volume of new information to be absorbed and acted upon
He had ignored the blood in his stool for about six months, assuming the cause was hemorrhoids. When his wife urged him to have it checked, doctors found colon cancer that had spread to his lymph nodes.
A foot of his colon was removed in February 2020, followed by chemotherapy that lasted through October 2021. While many patients can tolerate chemotherapy, he experienced severe side effects. “By about June or July, I started to feel like I wasn’t going to make it,” he said.
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Monique James, a psychiatrist, says becoming a patient is the first of three overarching categories of identity change in her patients at Memorial Sloan Kettering Cancer Center.
The other two are the arrest of the person’s current stage of life — such as starting a family or stepping into retirement — and the changes to the roles of loved ones.
The period before and just after diagnosis tends to produce the most uncertainty and is coupled with a high volume of new information to be absorbed and acted upon.
“I hear a lot about what it’s like to have such a rapid shift in that identity,” James said.
This change can be more jarring for adolescents and young adults. “It’s different for younger people because maybe they hadn’t taken any medications previously,” she said. “Now they’re coming into the cancer center multiple times a week” to see various specialists.
The physical changes brought on by the disease and treatment keep many patients from their normal activities of work, family responsibilities and recreation.
“The hope is that it’s just a temporary stop. But when you’re confronted with that [uncertainty], it can also be really difficult,” James said. “It can affect emotions and anxieties, and it can be quite motivating for some.”
Agha remembers the moment that cancer forced him to face his mortality. He was too weak to walk or bathe without assistance and spent most of his time in bed. Dressing himself one day, a task that took 20 minutes, he questioned whether he wanted to continue.
He told his wife, Nola: “I am done. I just cannot do this anymore, and I want to stop the chemo.”
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But his treatment was working, and the couple talked through their shared desire to be around for each other and their two young children.
“The experience of feeling like I was dying was very personal, versus philosophizing about it. The idea of death almost felt welcoming,” Agha said. “At the same time, I was at peace with my life and philosophy of a greater being.”
He finished his course of chemotherapy and returned to work as chief executive of a small software company. Before cancer, he would spend time fretting about potential problems in the business. After his cancer experience showed him that anything can happen, he has found peace in not having control of those outcomes.
An upcoming contract negotiation that would have had him stressed for weeks before cancer is now “just a 2 pm meeting on my calendar.”
When he became ill, Agha and his wife reversed the roles from 10 years earlier when his wife went through her own cancer treatment. He said the memories of feeling helpless as a caregiver made him feel guilty about needing so much support when he became the patient. Because his treatment coincided with the pandemic, extended family support was unavailable.
“It was heartbreaking to change roles and know all that Nola and the kids had to do,” he said. “By being sick I put you in this position. To me, that was really hard.”
Enduring treatment and confronting mortality can be overwhelming and complicated, often leading to changed perspectives on life.
Alicia Boulware, 33, experienced both a newfound sense of purpose and feelings of fear following 10 months of treatment for breast cancer.
“I have this blessing to take advantage of now, to be better and be great, more than what I wanted to be before,” she said.
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Boulware, who was 30 at the time of her diagnosis, felt like a different person. Back at work in a new department, no one knew she had been on medical leave.
“When you are bald or look sick, that’s a certain kind of presentation,” she said. “As my hair grew and the physical ailments faded, … it’s like the scars are gone and the world doesn’t see that I still live with it.”
Setting into a new normal takes time. Continuing observation for recurrence or progression has patients going into a cancer center a few times a year for scans, down from the weekly visits that had become a sort of routine for many months.
James says that there has to be some sort of reconciliation, and possibly grieving, to go from being immersed in patient-hood to finding a schedule freed from medical tasks.
“The aftermath of cancer is worse than going through it,” Boulware said. “I’ve never felt more lost or fearful of not knowing who I am now or what my limits are.”
Boulware found a virtual support group for African American people through Young Survivor Coalition, a community of young breast cancer survivors. Unsure at first of the need for support based on race, Boulware discovered a powerful connection through shared struggles and anticipations.
“To see other people talking about chemo brain or being distracted at work or ‘scanxiety,’ it gives me confidence that I’m okay, and it’s possible to keep going,” she said.
Scanxiety refers to the feelings of anxiety and fear around the process of having scans and then waiting for the results.
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Other options for community support include programs such as First Descents, a nonprofit group that provides free outdoor adventures for young adults dealing with cancer and other serious health conditions.
First Descents chief executive Ryan O’Donoghue says the goal of the programs is to be a catalyst for participants to help one another.
“Our goal is to hold the space to build that natural support system,” he said. In week-long retreats, participants go to a place they’ve never been, with people they’ve never met, doing things they’ve never done.
First Descents has been part of two externally led research efforts.
The research showed that the week-long programs have positive psychological effects related to anxiety, body image, lack of community and navigating the health-care system. There are some traditions and ceremonies on each trip, including getting to know everyone by their nicknames. But “we don’t want to be overly prescribed,” he said. Rather, programs such as kayaking and rock climbing act as a counterbalance to what is offered in the clinical setting. They are a way to heal the mind and soul, and reconnect with parts of the patient’s humanity, which tend to get lost while enduring treatments.
They found that without continuing support, it is easy to slip back into patterns of distress. The bonds of cancer survivors are rooted in shared experiences of trauma.
Retreat-style programs and community support groups encourage people to lean on their peers. They find safe spaces to talk about difficult feelings and what it’s like to move through the world as someone who has had cancer.
Stephanie Cheng, a palliative care physician at UCSF, has seen people find growth through the cancer experience. Indeed, there is a burgeoning field of research into post-traumatic growth that includes cancer patients and people who have survived other types of life-threatening events.
“One can tap into a deep well of resilience and adaptability … and find as part of their identity that they’re someone who can bounce back,” Cheng said. “Future setbacks aren’t as big.”
The process of rediscovering identity is nonlinear. For Boulware, the expectations of others can weigh on the experience.
“In the cancer world, we talk a lot about not being who you were prediagnosis,” she said. “You still have all the burdens of humanity and society … you have to return to that. But you’re returning as a different person.”
Emily Veach is a writer based in Indiana. They have been living with metastatic breast cancer since 2017. Veach is on the board of the Bay Area Young Survivors, co-founded a phone support line for the MBC community through SHARE Cancer Support, and completed the National Breast Cancer Coalition’s Project LEAD advocate training course.