Lori Hope

Five years cancer-free, and I’m feeling blissfully normal as I glance over the greeting cards at my neighborhood bookstore — until a 1950s illustration of a furrow-browed brunette clutching a handkerchief to her cheek catches my eye. “On the bright side,” the card reads, “she no longer had to worry about getting old.” Ignoring the italics, my heart races with fear as I think, “Cancer! What if my cancer returns and kills me before I’m old?” Then I laugh. “I get it, she’s already old!”

I wasn’t just being dense that day. Cancer changed me; I see things differently, and, although I’ve been what feels like my old self for years, I will probably always battle bouts of what I call post-cancer anxiety. 

Comprising a range of feelings from mild angst to intense dread, this fear of cancer returning can render survivors not just anxious, but hypersensitive, depressed and irritable. And it can show up without warning. 

“It’s the most common shared experience of cancer survivors across all diagnoses,” says clinician and researcher Karen Syrjala, PhD, director of biobehavioral sciences at the Fred Hutchinson Cancer Research Center in Seattle, who says that some cancer patients bounce back emotionally quite quickly, while others find their fear lasts longer. Her study of lymphoma and leukemia patients who underwent stem cell transplants, published in The Journal of the American Medical Association in 2004, found that this group of survivors had a particularly long emotional recovery, sometimes five years or longer, because the treatment is so aggressive. This information, she says, allows her to give them realistic expectations of emotional recovery.

 “If your house falls in an earthquake, your first task is to put it all together,” Syrjala says. “But it’s really the feelings of loss and worry afterwards that cause most of the trauma. Being unpredictable and uncontrollable — those are the two hardest aspects of anything stressful.”

Most survivors have recognizable triggers for the onset of anxiety — such as a new body ache, a celebrity’s death from cancer, cancer-related anniversaries, upcoming medical tests or even references to death in other contexts that can be extrapolated to cancer &mdash; like my greeting-card moment. The feelings can last from moments to days or months. But no matter those feelings’ intensity, duration, cause or moniker &mdash; fear of recurrence, adjustment disorder or, in extreme cases, post-traumatic stress disorder &mdash; virtually all cancer survivors experience anxiety. 

The good news is studies show that anxiety lessens with time, and we can learn our triggers and prepare to cope — and even use the anxiety to live a richer life. 

Amy Bartlett, 36, of Portland, Ore., steels herself for a PET scan, her first since completing treatment for non-Hodgkin’s lymphoma. Though not as severe as the anxiety that interrupted her sleep for months after radiation, her fear still comes in waves. “Your mind easily goes back to the place where you were when you had cancer. I’ll imagine having to call everyone again and tell them I have cancer, and then I’ll start crying. It’s like breaking a heart every time you tell someone.” 

As more survivors have begun to communicate with one another, especially online, a new lexicon has emerged. Indeed, the anxiety that precedes scans has acquired its own name: scanxiety. 

“That’s an appropriate description of an emotion we routinely encounter in our practice of oncology,” says Brian Lawenda, MD, clinical director of radiation oncology at Naval Medical Center San Diego. “Usually this classification of anxiety is secondary to a patient’s known medical condition, i.e., their history of cancer.” 

Lawenda says he sees anxiety in patients every day and attempts to assuage it. 

One such patient of Lawenda’s, 51-year-old Jacki Campbell of San Diego, was treated for a rare form of cancer, Burkitt’s lymphoma, three years ago, but she still gets CT scans two to four times a year. When medications and breathing exercises fail to calm her before upcoming scans, she visits Lawenda — this time for acupuncture.

During his residency in radiation oncology at Harvard Medical School, Lawenda says, he had little exposure to complementary therapies but heard anecdotally that patients were using acupuncture to help alleviate symptoms and side effects of cancer treatment, so he decided to study it. 

“I was convinced that it was merely acting as a placebo,” Lawenda says. “However, after I started integrating acupuncture into my practice, I found it extremely effective. Now I am convinced that the effects go much further than might be expected of a placebo.” 

Campbell started having acupuncture a year ago and noticed results the first day. “It really worked. I was so calm I went home and took a nap, and I’m not normally a napping person.”

Campbell sought help for her anxiety, but those who don’t may find that normal feelings of fear can overpower logic, sometimes resulting in unwise decisions, says David Spiegel, MD, director of Stanford University’s Psychosocial Treatment Laboratory. For example, Spiegel says that while most people hear the term “PSA” and think of the test to diagnose prostate cancer, he also uses it to refer to “prostate-specific anxiety.” Spiegel explains that some men are so anxious about cancer recurring that they choose aggressive surgery — with possible bad consequences such as impotence or incontinence &mdash; just to take care of their anxiety. 

Literature on fear of recurrence dates back to 1981, when psychologist and Harvard University professor Gerald P. Koocher, PhD, co-authored Damocles Syndrome, a book about those who had survived childhood cancer and their feelings of the cancer sword dangling above their heads. 

The first study about mastectomy patients and fear of recurrence was published in the journal Cancer Nursing the same year, but it wasn’t until more recently, when cancer survivors began to live longer (and be heard more) and survivorship issues began to surface, that the subject has gained more widespread attention. 

Spiegel recommends numerous ways to deal with fear of recurrence, including group support. His 1989 study of women with metastatic breast cancer who attended a support group showed that they fared better emotionally than women who did not attend such a group, a finding that has been confirmed by numerous studies. 

Support outside what is seen as a traditional support group can also be helpful. Seven months after lung cancer treatment, Barbara Coman, 68, of Savannah, Ga., was shopping for fabric when a saleswoman offered her help. “She had very short hair and looked like she might have had chemo, so I said that I’d been sick with cancer and she said, ‘Me, too!’ Then she invited me to a group of survivors that gets together once a month.”

The five women gather to not talk about cancer. “The rule is to not mention our problems. We just laugh and have fun. Just knowing we’ve all had cancer creates an instant bond.” 

Though they don’t share emotional issues collectively, they do support one another, Coman says, explaining that when Celine, a member whose cancer had recurred, called Coman in a teary mood, Coman couldn’t talk because she was getting on a plane to go out of town. “So I called [group member] Jean and said, ‘Celine is in trouble. Can you talk to her?’ And she did.” 

While most survivors can work their way through fearful emotions as time begins to heal, some can’t, and they might begin showing symptoms of post-traumatic stress disorder, PTSD, defined as the development of specific symptoms after a mentally stressful event that involves actual death or the threat of death, serious injury or a threat to oneself or others. Symptoms can include insomnia and feeling continuously afraid or on alert in addition to irritability, angry outbursts, difficulty concentrating, hypervigilance and an exaggerated response when startled. 

Syrjala says cancer survivors with PTSD may find themselves going out of their way to avoid reminders of cancer, including the place they were treated or even words as basic as cancer, which can make their hearts pound or leave them feeling like they hit a wall. 

Although PTSD is most often associated with combat veterans, studies show that the disorder affects as many as one-third of people who experience an extremely upsetting event, including cancer. While there is no explanation why some cancer patients get PTSD and others don’t, it is known that having advanced or recurrent cancer, being hospitalized longer and having lower income can be factors. In addition, research shows that childhood cancer survivors (particularly girls) and their mothers are at greater risk for the disorder.

A 2008 study of PTSD by the Dana-Farber Cancer Institute in Boston, published in the International Journal of Gynecologic Cancer, indicated that 26 percent of early-stage ovarian cancer survivors who were tested had mental health scores suggestive of PTSD.

More research is needed to determine the prevalence of PTSD across all cancers and to develop assessment tools and treatment options, which now include anti-anxiety and antidepressant medications,  other psychiatric treatment, counseling that offers strategies to refocus disturbing thoughts, and organized support groups.

The good news is studies show that anxiety lessens with time, and we can learn our triggers and prepare to cope - and even use the anxiety to live a richer life.

Campbell sought help for her anxiety, but those who don't may find that normal feelings of fear can overpower logic, sometimes resulting in unwise decisions.

Articles

Anxiety is common after cancer, but how do you cope?

Facing Down the Fear

Dani West had recently completed chemotherapy and felt terrific for the first  time in months. Her hair had grown in lush and curly, unlike her previously  thin, straight locks. 

“I wish my hair could be like that,” said her friend, Marcia, seeing Dani’s  new ’do for the first time. “It’s almost worth…uh….” Marcia stopped, catching  herself before delivering the blow. But Dani still felt it.

“She’s lucky that I’m a compassionate person,” said Dani, “or she may have  gotten decked!”

Most of us who have had cancer have at least one such "oops" story to share.  And although we usually laugh after the fact, in the moment these remarks can  cut deep, intensifying feelings of fear, anxiety or loneliness. Though no one  can avoid making a faux pas every now and then—most of us speak without thinking  as a part of normal conversation&mdash;we can keep blurts to a minimum by following a  few simple guidelines.

To make the following guidelines more memorable, I came up with an acronym.  Based on interviews and surveys of cancer survivors, caregivers and health and  communications professionals I conducted for my book, 

Help Me Live: 20  Things People with Cancer Want You to Know

, these guidelines will enable  you to be fully present and do what you want most: to provide comfort, care and  support.

isten without judging, interrupting, or feeling  like you have to provide an answer or solution. More than anything, people who  are suffering need to feel heard and understood. And when you listen well, you  tend to think before speaking, which helps you avoid gaffes.

sk permission before you give advice. Cancer  patients often feel overwhelmed with information, and if they've already made  their treatment decisions, they don't want them undermined.

nderstand that your friend is especially  sensitive. People who are traumatized often regress emotionally and need extra  care, so if they snap at you, forgive them.

ive it time if the patient doesn't feel like  talking or visiting now. Mood swings are normal, so don't take it personally if  your friend is less than friendly.

umor helps almost everyone cope. Give us a funny  movie or book.

et go of the myth that everyone  dies of cancer. No one likes to feel pitied.

mpathize by trying to remember a time when you  were terrified. That will help you understand your friend's fear and  anxiety.

nalyze your audience. Think about whom you're  dealing with. Does the person like shopping? Golf? Bring the appropriate  magazines.

each out by picking up groceries, running errands  or helping in the garden. General offers of help can feel overwhelming; most  people prefer specific offers.

o horror stories—ever&mdash;about others who died of  cancer. People want to hear hopeful tales, particularly about people with the  same kind of cancer who recovered.

ove! Consider the patient's needs  rather than your own. Put yourself in the other person's shoes and focus on  their feelings and concerns.

wn your fears. Say that you're afraid of saying  or doing the wrong thing. That will defuse tension and show you care.

alidate your friend by acknowledging that  negative feelings, such as anger or despair, are normal. No one likes to hear  they have to think positively all the time.

xercise caution by letting your friend bring up  the subject of health. Sometimes people with cancer just don't want to talk  about it, especially after they've completed treatment.

I encourage you to review these guidelines before talking with someone with  cancer. Even if you don't remember everything—even if you put your foot in your  mouth, as we all do&mdash;you will feel more confident, capable and comfortable.

Lori Hope is a public speaker, Emmy-winning documentary producer and  author of 

Help Me Live: 20 Things People with Cancer Want You to Know

.  A former medical reporter and editor of a San Francisco Bay Area monthly, her  work has appeared in Newsweek and other publications, and her commentaries have  been broadcast on radio stations nationwide. For more information, see 

A guide for supporting a friend or family member with cancer.

Lori Hope

Facing Down the Fear

What Really Helps

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