Simone Webster always struggled with her emotions and mood swings. But the floodgates really opened last year when she was diagnosed with breast cancer at 31 years old. “There must have been something I did,” said Webster, her eyes watery. “What did I do to cause this?”
The depression came in waves, a deep hopelessness overwhelming Webster, now 33, and making her feel like she needed to escape reality. “There’s so much you lose,” Webster said, including her right breast, her boyfriend and her chance of having kids. “It feels really dumb to feel hopeful.”
About a third of cancer patients struggle with depression, anxiety and other psychiatric disorders, although these conditions often go undetected and undiagnosed. Kristin Kilbourn, a clinical psychologist at the University of Colorado Denver, said oncologists often don’t want to open up this “can of worms,” not to mention that mental health has long been deprioritized, with health care centers losing money caring for psychiatric patients.
But this neglect comes at a significant cost, with mortality rates up to 39% higher among cancer patients with depression when compared to those without mental illness. Research also shows that the risk of suicide is 13 times higher in the week following a cancer diagnosis — and three times the average even a year later.
As Webster knows well, cancer’s toll isn’t limited to the body; it wages war on the mind too. While physicians and cancer centers have slowly increased mental health services, it’s often up to patients to fill in gaps in care by advocating for themselves and proactively seeking out mental health support.
“Your oncologist is not going to identify your mood swings for you,” Webster, of Washington, D.C., said. “They don’t know if you’re having suicidal ideation or depressed unless you tell them.”
How are cancer and mental illness linked
Fear and sadness are normal reactions to a cancer diagnosis, said Dr. Santosh Rao, an oncologist at University Hospitals in Cleveland, but clinical depression and anxiety are distinct. “It’s having a lack of interest in the things you like, changes in sleep patterns and food, potentially panic attacks” over a prolonged period and with a significant impact on daily life, he said.
Cancer can both aggravate and precipitate mental illness. In a 2023 study of 230,000 patients, 10% of people had depression or anxiety before their cancer diagnosis, and 22% were diagnosed afterward. New cases were most common among those with metastatic disease.
This connection is often brought on by the psychological stress of a new cancer diagnosis, the existential dread of facing death, and the strain this disease places on relationships. “Cancer sometimes will bring people closer together, but a lot of times it’ll actually exacerbate already frayed relationships,” Rao said.
Other drivers are the direct effects of cancer and the side effects of treatment, said Dr. Zev Nakamura, a psychiatrist at the University of North Carolina at Chapel Hill. Uncontrolled pain, for example, can make people quit everyday activities and have trouble sleeping. Similarly, hormone-blocking drugs, which are commonly used for prostate and breast cancer, can contribute to fatigue and mood changes, while cancer surgeries can profoundly affect one’s body image and sense of self. These can range from losing one’s ovaries and uterus in a total hysterectomy to needing to use a colostomy bag to collect waste.
Mental illness often continues even after completing cancer treatment, with research showing that survivors face a greater risk of mental illness even five years after their cancer diagnosis, compared to the general population. Nakamura noted that while mental health support can be limited for cancer patients, it’s even more limited for survivors. “There’s certainly not the capacity to provide ongoing, integrated mental health care,” he said.
Logan Piz, 25, knows this well. He was diagnosed with Ewing’s sarcoma, a rare type of bone cancer, at age 12, but his psychological challenges really only started three years later.
“When you’re in the height of your cancer diagnosis, you’re trying to get through the days,” said Piz, who lives in Truckee, California. “You start to push off all these feelings and dissociate in a way.”
After treatment ended, Piz was slowly suffocated with anxiety, convinced the cancer was going to come back, and post-traumatic stress disorder, haunted by all his friends who had died of cancer.
“I would break down crying, not even understanding where that had come from,” he said.
Mental illness can be deadly for cancer patients because it often undermines their ability to follow through with treatment and adopt healthy habits like exercising, eating a healthy diet and avoiding alcohol or drugs, Rao said.
These are all behaviors associated with improved cancer survival. But “it’s harder to motivate yourself when depressed,” he continued.
Similarly, poorly managed mental health symptoms can decrease patients’ willingness to start treatment or their ability to tolerate side effects, prompting some to cut back on their doses or discontinue treatment altogether, Nakamura said. As such, treating depression, anxiety and other psychiatric disorders can be lifesaving. In a 2020 study of 55,000 veterans with lung cancer, participating in a mental health treatment program was associated with 20%-25% lower risk of dying from cancer.
Gaps in accessing mental health care
The challenge lies in ensuring cancer patients and survivors actually have access to mental health care.
Even getting an appointment can be difficult: More than half of Americans live in regions federally designated as “mental health professional shortage areas,” and hospitals have largely underinvested in clinical psychology and psychiatry programs since they don’t generate much revenue, according to Kilbourn, the clinical psychologist at UC Denver.
If a patient can get in, there’s the question of whether they’ll be able to pay. Only 20%-40% of mental health providers accept insurance, according to a 2017 study.
Other cancer patients may not even realize there’s a problem until too late. Many oncologists don’t bring up mental health on their own, partially because they haven’t been trained to talk about emotional well-being and because there’s limited time during oncology visits. “They don’t really feel comfortable with it,” Kilbourn said. “They’re afraid of what’s going to come out, and they’re not going to be able to manage it.”
In Piz’s case, mental health never really came up with his oncologist until he gathered the courage to discuss his symptoms independently. “I think often that mental health might be seen as someone else’s job,” he said.
That may be changing.
There’s been a growing movement in the U.S. to integrate mental health with cancer care, according to Yasmin Asvat, a clinical psychologist at Rush University Medical Center in Chicago. Since 2015, the American College of Surgeons Commission on Cancer has required all accredited centers to screen patients for psychological distress, and in a 2018 survey, 85% of cancer centers offered mental health services.
The benefit of such integration is that services are less stigmatizing and more easily accessible, she said, since patients don’t need to coordinate yet another aspect of their care. Asvat, for example, will often see patients at Rush while they’re getting their chemotherapy. Similarly, at UNC Chapel Hill, there is a patient and family resource center inside the cancer center that offers nutrition guidance, a wig shop, a library with mental health resources and psychiatrists like Nakamura, who see patients within two weeks of a referral.
However, the quality of integration varies tremendously, and this level of support is still the exception rather than the rule. “Most people receive their care in community cancer settings, where you don’t have mental health routinely embedded,” Nakamura said.
What can patients do
Despite the challenges, patients can take some steps to get the support they need.
Asvat pointed to online self-screening tools, which are being increasingly used by patients. These can be helpful for starting conversations with oncologists, she said, adding that it’s important to use tools that have been clinically validated and to understand that these results can’t replace a formal diagnosis.
More generally, patients need to advocate for themselves to ensure mental health is part of the cancer conversation, Rao said. It might even be helpful for patients to write down a list of concerns they want to discuss and share that with their oncologist, given how fast-paced these visits can be.
Even if a referral to a mental health provider isn’t realistic, oncologists can help as best they can and talk through available resources. For example, research shows that acupuncture, yoga and music therapy can help reduce depression and anxiety symptoms in patients with cancer. Rao, who is also the president of the Society for Integrative Oncology, said that mindfulness-based interventions in particular have some of the strongest evidence. “That’s an approach focused on building awareness, on trying to stay in the moment and thinking about what might be triggering your emotions,” he said.
Asvat said that support groups are also particularly popular, helping patients feel connected, valued and free to reimagine their cancer journey.
Those support groups can take many forms.
Piz helps lead First Descents, an outdoor adventure group for 18- to 45-year olds with cancer or multiple sclerosis. Participants go surfing, rock climbing and whitewater kayaking during the day, and gather around the campfire to share their hopes and fears at night.
“The goal isn’t to avoid falling in water; the goal is to get back up and to know that everyone on this trip is waiting for you,” said Webster, who went on a First Descents trip in July. “To be around people who love you, having met you five days before, just because they know what it took for you to get here, there’s really nothing quite like it.”
Other support groups are organized around everything from cooking to creative writing. At the Smith Center for Healing and the Arts in Washington, D.C., Webster attends regular supper clubs, where she learns about nutrition and connects with other survivors while cooking fresh-made pita, pumpkin ravioli and other plant-based foods.
The Smith Center also hosts monthly “radical writing” workshops, where participants free-write and share their work in a safe space. Webster had been looking for a place “where I can just cry and fall apart,” frustrated with how friends and family would tell her how lucky she is and sometimes dismiss her feelings. The workshops were so meaningful to her, Webster said, because they were “a nonjudgmental space where I’m allowed to grieve.”
‘Keep going’
Kilbourn acknowledged that it’s perhaps unrealistic to ask cancer patients to fill in these gaps, since this disease already demands so much of them and mental health is inherently a difficult topic to talk about. And that’s not to mention how caregivers are often neglected, as they also face high rates of depression and anxiety but often don’t receive any support, she said.
Some of these challenges will be addressed with time, with a new generation of oncologists entering practice and emerging research into everything from mobile apps that expand access to care to psychedelic-assisted therapy that helps those with advanced cancer cope with depression, anxiety and existential distress. There are even new health care delivery models, where a single psychiatrist supervises a large panel of patients by leaning on social workers and nurses to meet with these patients and on primary care providers to prescribe medications.
But there’s no saying when mental health will become a standard part of cancer care.
“It’s difficult because it’s all wrapped up in money and these big medical systems, which are very hard to change,” Kilbourn said. Still, support groups give her hope since they bring together cancer patients, survivors and caregivers across the country, fostering resilience and connection in a fractured health care landscape.
“It’s only in the cancer groups where you meet people who have been out for many years where they could say, ‘I hear you. I was where you were. Keep going.’” Webster said. “Not one other person can tell you that.”