After battling with cancer, survivors may still battle with fear, anxiety, depression and other crippling emotions.
By: Samantha Costa
U.S. News & World Report
Steve Pake of Rockville, Maryland, was out for a run in early 2013 when a wave of anxiety swept over him. He sat on the curb “in absolute terror” with his head between his knees, in tears. He was scared of the surgery required to treat his testicular cancer, even though it wasn’t looming. The procedure had taken place two years beforehand.
It’s not uncommon for cancer survivors like Pake to experience crippling emotions even years after treatments have ended or the word “cure” is handed down. Follow-up visits, anniversaries of diagnoses or surgeries, birthdays, sights, smells, objects or symptoms similar to those they had when they found out they had cancer, such as lumps or aches, can be enough to trigger a tailspin of fear and anguish.
Indeed, the National Cancer Institute says many patients, survivors and family members of children who battled cancer develop “cancer-related post-traumatic stress,” which it likens to post-traumatic stress disorder, only not quite as severe as the full-blown condition that arises when some individuals, such as rape survivors or members of the military, are exposed to seemingly imminent death, injury or another major sources of stress.
Cancer survivors can also develop PTSD. One study published in 2011 in the Journal of Clinical Oncology found that more than one-third of the 566 Non-Hodgkin lymphoma survivors the researchers tracked for PTSD reported chronic or worsened symptoms over the course of five years. The research team concluded that health care providers should be vigilant for PTSD in their patients with cancer to increase the odds of staving it off and connecting patients with appropriate mental health treatment.
Pake, 37, has been cancer-free for four years now, but still battles the anxiety and depression he says he muffled during treatment.
“It felt so real, like it was happening right then in that moment,” he says of his mid-run meltdown. “Repressed fears and pains and worries all came out, drowning me. When I was fighting cancer, I adopted a warrior mentality and just buried anything I felt.”
Jodi Inverso, 36, of Lawrenceville, New Jersey, has also experienced these symptoms. Diagnosed with breast cancer at age 30, Inverso underwent a treatment regimen that included 16 rounds of chemotherapy, six weeks of radiation, a double mastectomy with reconstruction and hormone therapy. While she has been cancer-free for six years, she still feels disgusted when she spots a small pack of crackers or graham crackers – just like those served on the hospital food cart during chemotherapy. She is also plagued by worry that her disease will someday return.
“Each time I feel any lump or bump, my hip or back hurts, or anything at all – I immediately think the worst,” Inverso says.
Surviving cancer is one thing, but getting back to the “new normal” is an entirely different life adjustment, says Dr. Catherine Alfano, rehabilitation psychologist and vice president of survivorship at the American Cancer Society.
Some people are filled with such anxiety that a simple headache or moment of fatigue will catapult them into a cycle of worry over whether their cancer has returned, Alfano says.
Neither Inverso nor Pake has been officially diagnosed with cancer-related PTSD, which is marked by defensiveness, irritability, fear, cloudy thinking, sleeping problems, self-isolation and a loss of interest in life, according to the National Cancer Institute. Patients with early-stage cancers are 20 percent more likely than the general population to meet the criteria for PTSD, as outlined by the American Psychiatric Association in its Diagnostic and Statistical Manual of Mental Disorders, or DSM. The rate is 80 percent in those whose cancer has come back.
According to the American Cancer Society, more than 14.5 million cancer survivors were alive as of January 1, 2014, the most recent year for which data are available. ACS estimates also suggest that more than 1,650,000 new cancer cases will be diagnosed this year.
How to Cope
First and foremost, understand that cancer can not only wreak havoc on the body but on the mind, too, says Dr. Anne Kazak, of Nemours Alfred I. DuPont Hospital in Wilmington, Delaware. She is considered a pioneer in the field of post-traumatic stress from pediatric illness.
“Part of the work we do with people in treatment is help them understand or appreciate that they went through experiences where they didn’t have control over what happened,” she says.
You may be done with treatment, and you may even be referred to as cured. But the psychological effects of experiencing a serious illness can take much longer to surface, Kazak says.
You didn’t have control over the fact that you developed cancer or were given the prognosis of just a year or two to live while others in treatment beside you passed away. “For both kids and adults, it’s a big deal,” Kazak says.
If you or a loved one has cancer or has survived it, experts suggest taking these steps to safeguard your mental health:
Seek help from a mental health professional. Whether you’re the parent of a childhood cancer survivor or a survivor yourself, it’s important to remain open about your feelings of fear, anger or sadness.
Treatment for cancer-related post-traumatic stress is similar to what patients undergo for PTSD and can include cognitive behavioral therapy, which can help patients learn coping strategies to better manage stress, develop awareness of distressing thought patterns and become desensitized to triggers.
Inverso began seeing a therapist at the start of her chemotherapy treatments. She had plans for a large family, and with just one child who was 2 at the time of her diagnosis, she recalls being told, “You have a beautiful son; you should feel blessed,” but she never felt her family was complete. She was angry about the possibility of never having another child. Despite all odds, she was able to have twin daughters after her cancer treatments were complete.
To find emotional support resources near you, check out this search tool through the American Cancer Society.
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