TEONA DUCRÉ BONDED INSTANTLY WITH MARK GELINAS over their shared sense of humor when she met him at an Atlanta fundraising event in September 2017. Both were pancreatic cancer survivors and active in patient advocacy. They swapped stories about “how crappy pancreatic cancer was,” she recalls.
“You never get to say it out loud, even to your family,” says Ducré, a stage III survivor who was diagnosed in April 2016 and whose cancer is inoperable. “We talked about everything from stomach issues and throwing up and all of the stuff that happens with chemo. And we laughed, and we drank, and we laughed.”
Through her advocacy work, Ducré, a 47-year-old Atlanta resident, had known others who did not survive cancer. Still, when Gelinas called about a cancer recurrence, she argued with him. “I remember us having a conversation and I said, ‘Neither one of us are going anywhere.’” His death in December 2018 surprised her, even though Gelinas had a feeling he wouldn’t recover this time. “And I think it’s because he was the person that I had gotten close to.”
Since the onset of the COVID-19 pandemic, grief has shadowed many of us as we come to grips with deaths, lingering symptoms and lost opportunities. But cancer survivors—a broad umbrella term that ranges from patients in treatment to individuals free of disease for decades—have always grieved as they experience the untimely deaths of others and the precariousness of their own mortality.
Like everyone else, cancer survivors mourning the death of someone they care about experience various facets of grief, says Joseph Goveas, a geriatric psychiatrist and grief researcher at the Medical College of Wisconsin in Milwaukee. These feelings can range from survivor’s guilt as one’s life continues while another person’s ends, to grief one feels in mourning the departure of another person when their death is likely, he says. Or someone else’s death can heighten worries about one’s own mortality.
The loss of a loved one can also result in people questioning their life’s meaning, says Wendy Lichtenthal, a clinical psychologist who directs the bereavement clinic at Memorial Sloan Kettering Cancer Center in New York City. “We all walk around with psychological defenses that protect us from thinking every second of the day that we can die,” she says. These defenses can be more difficult for cancer survivors to construct and maintain. “Learning of the death of someone else with cancer—and it’s certainly scarier yet if it’s the same kind of cancer—it knocks those defenses right back down,” Lichtenthal says.
Grappling with and learning to cope with grief, experts stress, is a journey that’s unique to each individual. It takes time and sometimes the support of a mental health professional for people to learn how to live with loss without it dominating their lives, thoughts and behaviors. For some people, the first year after death is the most difficult, while others don’t feel the full weight of their loss until later. For roughly 10% of bereaved adults, symptoms of grief—including emotional numbness, avoiding reminders that the person has died and finding it hard to reintegrate into everyday life—remain severe and debilitating a year after a loved one’s death, according to a study published in 2017. Recently, the American Psychiatric Association added the related diagnosis, prolonged grief disorder, to its Diagnostic and Statistical Manual of Mental Disorders.
The encouraging news is that the vast majority of people who walk the corridors of grief are “instinctively able to grapple with what happened and regain their footing,” says Natalia Skritskaya, a clinical psychologist and researcher at the Center for Prolonged Grief at Columbia University School of Social Work in New York City. Although the emotional turmoil can be painful, it’s a natural human reaction and a tribute to your loved one, she says.
“It’s our mind and bodies trying to help us adjust to what happened,” Skritskaya says. “The pain is a signal—it tells us something. It tells us that the relationship was important. And you need to give some time and space to process what happened, to grieve, to heal.”
Cancer survivors may have fared well themselves when facing the disease, but they might experience grieving as part of extended families that are genetically linked by cancer. Or they may have formed friendships through support groups, fundraising walks, advocacy work and social media networks. These connections can be intense, forged in the fire of treatment and survival. Dana Deighton, an esophageal cancer survivor, provided long-distance support by phone and text to a young woman with stage IV esophageal cancer for four months before learning of her death in January 2022.
“It takes your breath away, even though I had never seen her face or given her a hug in person,” says Deighton, who is 52 years old and a mother of three in Alexandria, Virginia. “She was a mom. She wanted to live so badly for her daughter. She wanted to live for her husband.”
Broadly speaking, the death of a spouse or a child triggers the most intense grief responses, but deep grieving is not limited to close familial relationships, says Mary-Frances O’Connor, a clinical psychologist and grief researcher at the University of Arizona in Tucson, who recently authored The Grieving Brain: The Surprising Science of How We Learn From Love and Loss. “The most difficult losses are when the loss takes away something of how you understand the world, or are in the world, or function in the world,” she says.
Cancer survivors can form fierce bonds with others at a stage of midlife or later when it’s typically less common to start new, intimate friendships. These relationships can remain significant years after treatment has ended. If the person dies, O’Connor says, “how do I understand a world where my proof that you can survive is gone?”
Grieving individuals are more likely to progress into prolonged grief disorder if they have suffered a prior trauma or have been previously diagnosed with depression, Skritskaya says. Other risk factors include experiencing an unexpected or violent death and losing a child. Being buffeted by multiple deaths, especially when the losses happen in a relatively short stretch, can boost someone’s vulnerability, given the recurrent stressors involved, and potentially erode one’s circle of support, she says.
“Because we need support, we need other people to help us grieve and recuperate,” Skritskaya says. “If it’s multiple losses, then we’re losing those people who we would go to for support, so it makes it harder.”
Lichtenthal advises those who grieve to allow themselves to feel the tumult of their emotions, despite the discomfort. Trying to avoid feelings may cause them to loom larger, she says. The pushing away as a psychological strategy often just leads people to feel more disconnected from a loved one, she says, and a reminder of their death may cause “a tidal wave” of grief. Being able to alternate between sometimes focusing on the pain of loss while also allowing oneself to be occupied with other parts of life is one coping approach, called the dual process model of coping. “It really is about finding a way to be in the world without that person who you cared about, who you lost physically being there,” Lichtenthal says.
Along the way, it’s important to transform your relationship and connection with the deceased loved one, Lichtenthal says. While you can no longer make jokes with your friend about cancer, you can still relish how they would “get” a particular situation. “Just thinking about how they would laugh at it, and a smile comes to your lips,” says Lichtenthal. Sometimes, people continue to send an occasional text to the deceased loved one’s phone to retain that emotional link.
Those who are grieving should be kind to themselves and reach out to others for support, Skritskaya says, while accepting that some people may not be receptive to edging too close to their own mortality fears for their loved ones and themselves. “People are expected to bounce back quickly,” she says of the attitudes of others. “Or people just feel awkward around bereaved people—they don’t know what to say.”
People in mourning may rethink where they have invested their time and energy and shift their life priorities as part of the grieving process, Lichtenthal says. “Finding ways to connect with what matters most, again going back to this idea that life is finite.” For instance, women with metastatic breast cancer will sometimes talk about raising funds for more research in honor of their sisters who went before them, she says.
Understanding Grief’s Biology
For some people, grief can last for an extended period of time, affect a person’s daily life and even have physical symptoms.
The comprehension of grief’s impact on the brain is “still in its infancy,” says geriatric psychiatrist Joseph Goveas of Milwaukee’s Medical College of Wisconsin, one of the grief researchers trying to unravel the biological underpinnings. As part of his research, Goveas is leading a National Institute of Mental Health-funded study that will follow recently bereaved adults with brain imaging and clinical assessments to determine if there are any changes in the brain that reflect who develops prolonged grief disorder and who does not.
“Grief is not an illness, right? Grieving is a normal phenomenon,” Goveas says. “But there is a select minority who develops complications. Isn’t it important for us to understand who that minority is?”
While everyone’s grieving journey is unique, broadly speaking there is a trajectory. In the early stages after someone dies, often called acute grief, people can wrestle with much more than persistent sorrow and longing for the deceased loved one, says Mary-Frances O’Connor, a grief researcher at the University of Arizona in Tucson. They may experience anxiety, anger, remorse and depression. They may struggle to sleep or discover that they cannot concentrate or think clearly. “Grief is very complex and requires a lot of different parts of the brain to create that experience,” she says.
Grief’s impact on the brain also can leave fingerprints on the rest of the body. For example, it may impact heart rate, possibly by affecting a region of the brain called the cerebellum, O’Connor says. In a review article she authored, published in 2019 in Psychosomatic Medicine, O’Connor detailed studies showing potential influences of grieving on everything from increased heart rate and blood pressure to elevations in inflammation levels and the stress hormone cortisol. These physical responses are often temporary, occurring within the first six months of grieving, and don’t happen to everyone, she notes.
Like Goveas, O’Connor describes current insights into the biology of grief as limited in scope. Citing one example, she says grief studies that look at the brain—typically with a technology called functional magnetic resonance imaging, which creates images of brain activity while someone performs tasks—usually only assess the brain at a single point in the grief process. So it remains unclear how grief alters the brain over weeks or months, she says. Moreover, it’s not yet known if individuals who report more mental health symptoms related to grief are also prone to higher blood pressure and other physical symptoms.
Grief never completely fades because of lasting memories and connections with the loved one who died. “But for most bereaved people, it gradually diminishes over time,” says Natalia Skritskaya, a clinical psychologist and adjunct associate research scientist at the Center for Prolonged Grief at Columbia University School of Social Work in New York City. “The pain recedes, and it becomes more of a background feeling versus a dominant, overwhelming, everyday experience.”
But mental health clinicians become concerned when someone’s feelings of persistent yearning and longing extend for longer than a year. These feelings must be severe enough to impair daily life and include at least three out of the following eight symptoms, according to a JAMA Psychiatry piece published in 2022 that outlines the criteria for prolonged grief disorder:
- A feeling as though a part of oneself has died
- A marked sense of disbelief about the death
- Avoiding reminders of the deceased loved one
- Intense emotions, such as anger or sorrow
- Difficulty reintegrating into life
- Emotional numbness
- Feeling that one’s life is meaningless
- Intense loneliness
It’s important to seek out help for severe, lasting grief. A type of treatment called prolonged grief disorder therapy has been shown to be effective, Goveas says. While antidepressants may ease related depressive symptoms, the therapeutic approach also is needed to help those who are stuck in the protracted and disabling grieving process to better adapt to the loss and find purpose and meaning, he says. Columbia University’s Center for Prolonged Grief provides more details about diagnosis and treatment.
Mourners appear to fare better if they can tap into coping skills as they grieve, O’Connor says. At moments, practicing acceptance can be helpful, allowing the feelings to wash over oneself. Writing in a journal or talking to a friend can assist with processing emotions, she says. Practicing yoga or meditation can ease the stress that grief inflicts on the body.
Seeking out therapy is always an option, O’Connor says, as it provides another avenue for processing feelings. It should definitely be considered if someone is relying too much on alcohol or other substances in a misguided attempt to ease the pain.
Deighton, who was first diagnosed with stage IV esophageal cancer in 2013 and had a recurrence in 2015, will not venture a guess of how many people with her condition whom she knew have died—people she grew to care about during infusion treatments and through advocacy work. “Not a day goes by, not a minute goes by that I don’t know how fortunate I am,” says Deighton, who has no evidence of disease. “I don’t take it for granted.”
Through advocacy, Deighton pushes for more research funding and better outcomes for patients, including those she meets. “I just really believe in that give-back, and it honors the people that didn’t make it,” she says. Her commitments include working with Imerman Angels, an organization that connects cancer survivors for one-on-one support. Through that group, she met the young mother with late-stage esophageal cancer.
And while research has shown that chronic avoidance of grief has been linked to a higher likelihood of prolonged grief, the brain does need periodic breaks. For example, one may decide, “‘I’m just going to cheer for my daughter’s soccer game and not think about this,’” O’Connor says. “There’s nothing wrong with that, and in fact, it enables us to engage in ongoing life.”
Ducré, whose cancer has been in remission with no evidence of disease since November 2016, counts herself fortunate to have seen her two children reach their college years. The support of a close-knit circle of family and friends, along with regular therapy, helps keep her grounded in the present moment, Ducré says. So does meditation and yoga.
Like Deighton, she also gives back through advocacy, including her work with the Pancreatic Cancer Action Network. But sometimes, Ducré’s family and friends suggest that she step back when anxiety, sadness and fear ramp up.
“Every time somebody dies, I think, ‘I’m riding this wave now, and I got to that all-important five-year point. But how long am I going to be able to skirt death before this disease catches up with me?’ Because it never goes away. People getting diagnosed and people dying are a reminder of that.”