Navigating the Psychosocial Effects That Can Outlast Cancer And Its Treatment

November 15, 2020
Jeannette Moninger

Heal, Heal® Fall 2020, Volume 8, Issue 4

By 2040, experts predict there will be more than 26 million cancer survivors in America. Based on findings from several studies, these survivors can expect to spend large portions of their lives managing the disease’s effect on their physical and mental well-being.

Lauren Ghazal was in a state of shock after she received a stage 2 Hodgkin lymphoma diagnosis two years ago. “I couldn’t process anything that was happening,” says the now 28-year-old. “I focused on doing what was needed to get through treatment.” Cancer treatments were rough, but Ghazal was even less prepared for what came after treatment ended. “I no longer had frequent visits with my oncologist. Friends and family checked on me less and less. And there I was, bald and extremely fatigued from chemotherapy,” Ghazal says. “I’m told to go and live my life again. And that’s when I fell apart.”

Up to 20% of cancer survivors experience significant anxiety, depression and/or post-traumatic stress sometime during the 10 years after receiving a cancer diagnosis. Nearly twice as many deal with fear of recurrence and distress brought on by post-treatment side-effects, altered body image, social isolation and financial struggles. “People want you to bounce back to your precancer self because they’re truly happy that you’re finished with treatments and free from disease,” Ghazal says. But she unexpectedly found herself facing an onslaught of new diseases, ones that threatened her mental well-being. “I was diagnosed with severe anxiety and depression,” she says.

A family nurse practitioner, Ghazal learned she had cancer while pursuing a doctorate in nursing research at the New York University Rory Myers College of Nursing. Inspired by her life experience, she now studies cancer survivorship issues in adolescents and young adults with the goal of improving their overall quality of life.

Back To 'Normal' After Treatment For Cancer

By 2040, experts predict there will be more than 26 million cancer survivors in America. Based on findings from several studies, these survivors can expect to spend large portions of their lives managing the disease’s effect on their physical and mental well-being. “Post-treatment is the time when well-intentioned family and friends assume their loved one is ‘back to normal.’ But it’s also the first time a cancer survivor has the time and energy to process their experience,” says Lucia Fanjul, a licensed master social worker at CancerCare, a national nonprofit organization that provides free professional support services to people affected by cancer. “For survivors, this is often a period of intense sadness, anger, instability and anxiety. The urgency of the diagnosis and active treatment has passed, but the emotional turmoil remains.”

Studies show that cancer survivors are more than twice as likely to have debilitating mental health problems and worse overall quality of life than people who never get the disease. And the incidence of mental health problems is six times higher in survivors who have other chronic illnesses, such as heart disease or diabetes. In general, cancer survivors who are young, less educated or earn lower incomes struggle the most.

Baltimore resident Katie Petralia was diagnosed with anxiety and post-traumatic stress disorder (PTSD) after completing treatment for stage 2 non-Hodgkin lymphoma three years ago at age 23. “My anxiety level skyrockets every time I meet new people who don’t know my cancer story,” she says. “I’m nervous to bring it up because I don’t know how people will react. It’s like I’m hiding some big secret.” Petralia is also still coming to terms with another unexpected blow: Cancer treatments may have affected her chance to bear children. “I had to start chemotherapy immediately because masses pushing on my throat made it hard to breathe. There wasn’t time to look into fertility preservation,” she says. “Even though I’m not at a point in my life where I’m ready to start a family, it’s been emotionally difficult to come to terms with what may or may not be possible for me in the future.”

Doris Cardwell of Spearfish, South Dakota, struggles with a different, all-consuming worry: whether her three daughters will also develop breast cancer. Cardwell, a contributor to CURE®, a sister publication of Heal®, learned of her stage 3b inflammatory breast cancer in 2007 when she was 38. While there doesn’t seem to be a genetic link to this type of breast cancer, Cardwell wrestles with guilt. “My daughters are in a high-risk category because of my health history,” she says. “At a very young age, they’ve already had to face life-altering decisions. I worry about them getting breast cancer, as well as my cancer coming back.”

While undergoing treatment at Cone Health Cancer Center at Alamance Regional in Burlington, North Carolina, Cardwell helped start a survivorship program. She’s now an ambassador for the National Coalition for Cancer Survivorship (NCCS). After more than 10 years in remission, Cardwell says she doesn’t think she’ll ever put cancer completely behind her. “People offer encouragement and say, ‘You’ll be fine,’ when I have a scan coming up,” she says. “But only someone who has experienced cancer understands how quickly life can change. You never again assume that everything will be fine.”

Well-intentioned family and friends aren’t the only ones who assume all is well. After treatments, cancer survivors often find themselves thrust back into the care of primary care physicians who may not fully grasp cancer’s lingering effects on both the body and psyche. Cardwell temporarily relocated her family to North Carolina while getting treatment. Now that she’s living in South Dakota, finding a doctor who understands issues such as the cardiotoxic effects of chemotherapy on the heart has been a struggle. “One doctor told me my concerns were unfounded. I felt like I was being labeled a difficult patient,” she says.

Dr. Thomas J. Smith, a medical oncologist and palliative care specialist at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore, understands Cardwell’s concerns, but he says primary care physicians are challenged to keep up with the latest findings on all types of diseases from heart disease, diabetes, hypertension and, yes, cancer. “Ideally, a patient would take a survivorship care plan prepared by their oncologist or cancer center and hand that to their primary doctor to get the ball rolling on proper follow-up care,” says Smith, who also recommends asking the front desk to schedule a longer appointment so a patient doesn’t feel rushed.

Anxiety, depression and PTSD are the most well-known mental health problems associated with cancer. But doctors are seeing an uptick in cancer survivors who feel demoralized and apathetic. “These are true clinical diagnoses,” Smith says. “You’re tired of being tired. You’re tired of feeling hopeless, sick and helpless. Yet you feel like there’s nothing you can do about any of it, so why try.”

Smith knows this feeling intimately. In 2016, he had surgery for prostate cancer. The cancer came back and spread. Treatment intended to save his life caused lung damage that keeps him from enjoying a lifelong passion: running. At one point, he felt so low that he checked into a psychiatric unit to keep from harming himself. “The continual uncertainty of what life holds takes a toll,” he says.

“You’re always wondering: Will the cancer come back, what will that feel like, can I make it through more treatments, how will it affect my loved ones? And, of course, am I going to die sooner than I hoped?” Recently, Smith recognized that he and the cancer survivors he treats experience PTSD triggers almost daily. “It can become a constant struggle to have a few hours where you don’t think about cancer,” he says.

Mind Over Matter

Dealing with cancer is a life-altering, traumatic experience. “A cancer survivor needs time to process what has happened to them and to understand how the experience changed them,” Fanjul says. A mental health counselor can give survivors the tools to work through emotions. Antidepressants or anti-anxiety medications can help, if needed. What someone shouldn’t do is hide their emotions or feel shame, says Sarah Johnson of Boston. In 2017, Johnson, then 28, put on a brave face as she received treatment for papillary thyroid cancer.

“You hear that thyroid cancer is a ‘good cancer to have.’ It’s highly treatable and curable. So that’s the message I conveyed to everyone: It’s cancer, but it’s no big deal,” she says. A year after surgery and radioactive iodine treatment, Johnson found herself swept up in a tidal wave of emotions. “It was like, ‘Oh my God, that was horrible! That was a big deal, and I’m not OK!’” says Johnson, who discovered that it’s harder to ask loved ones for support later on after having been emotionally detached during treatment.

Help comes in different forms. For Smith, an online support group provided a lifeline. “I had some unusual medication side effects that even my doctors didn’t understand or acknowledge, and then I found a discussion online dedicated to the topic,” he says. “I felt less alone and less crazy.” Meditating also helps him be less reactive to situations out of his control. “If I start to get panicky about an upcoming test, I find a space for that worry in my brain and park it there.” Smith uses Calm, a meditation app, and he also recommends some form of structured exercises such as walking, yoga or tai chi. “There’s undeniable proof that these activities benefit a cancer survivor’s physical and mental health,” he says.

Petralia found comfort in a four-legged friend. Earlier this year, she adopted an emotional support animal. “When my anxiety goes up, petting my cat Stevie calms me down,” Petralia says. Studies show that having a pet lowers stress, anxiety and depression and eases loneliness. If you live in a place that doesn’t allow pets, an official letter from a licensed mental health counselor allows you to have an emotional support animal regardless of the no-pet policy and without paying extra fees. And because emotional support animals don’t need special training like service animals do, you can find a good fit through your local animal shelter.

While undergoing treatment, Ghazal participated in an eight-week creative writing class sponsored by Lacuna Loft, a nonprofit organization that supports young adult cancer survivors and caregivers. She continues to put pen to paper, capturing her feelings in a journal. “I still see
a therapist, and when I’m anxious, I journal and talk to my friends,” she says. “At first, I felt defeated that I had just finished this rigorous cancer treatment, yet I couldn’t control the emotional fallout. My therapist helped me learn not to be ashamed to talk about the mental health effects of my diagnosis with others.”

Cardwell also finds it therapeutic to talk about her feelings — to family and friends, co-workers, her therapist and others. Her blog for CURE® and her NCCS ambassadorship are two ways she lets other cancer survivors know that it’s OK to feel all of the emotions. “I want others to know that they’re not alone, they’re not crazy and normal isn’t really a thing once you’ve had cancer,” she says. Cardwell is doing her part to educate people without cancer, too. “I’m no longer bashful about explaining how cancer affected me in the past and continues to affect me today,” she says. “I remind myself that people have no idea what it’s like inside my heart, body or head post-cancer. They can only know if I tell them. Over the years, I’ve learned that it takes more strength to get help than to hold it all in. If you don’t get it out, it will swallow you.”

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