Facing the Fear of Recurrence
Find ways to make fear of recurrence part of your cancer journey.
BY Kathy LaTour
PUBLISHED July 21, 2017
The last treatment has ended. It’s time for balloons and the ringing of the gong, either literally or figuratively. Everyone claps as you make your way out of the treatment center and head for home. The last few months have been filled with surgery, immunotherapy, chemotherapy, and radiation or some combination thereof. You are ready for it to be over so you can resume your life. Yet, on the way home, you can’t help but think, “Who is watching me now?”
It isn’t even a month later when the ache in your elbow is no longer a result of bumping it against the kitchen counter. You are convinced the cancer is back and you are dying, so you call for an appointment to confirm what you know to be true. Until you meet with the oncologist, which will confirm that the aching elbow is just that, you don’t sleep and dying consumes your thoughts.
The reality of cancer is that it can return in the same location in the body or metastasize to another. As a result, the fear of cancer recurrence (FCR) can produce situations like the one above, a scenario that seems outrageous but may be experienced to a greater or lesser degree by up to 97 percent of patients with cancer, depending on age and whether children are involved, says Susan Krigel, Ph.D., a clinical psychologist with the Midwest Cancer Alliance (MCA) at The University of Kansas Cancer Center (KUCC) in Kansas City, Kansas.
Krigel has studied FCR as a specialist in psycho-oncology, which focuses on the mental health of patients with cancer. After seeing the levels of anxiety in her patients, she chose to explore both the causes and possible solutions for those experiencing FCR through the MCA, the outreach division of KUCC that offers cancer centers across the state access to clinical trials and supportive care for their patients. “I have appointments with individual patients with cancer on interactive televideo,” she explains. “Many patients with cancer who live in Kansas have very little access to any specialists, including psychologists or those with experience in oncology.”
Fear of recurrence manifests in differing levels of anxiety that result in intrusive thoughts about the cancer returning, says Krigel, pointing out that those with the highest levels of fear are likely to be parents of small children. “We know that high levels of anxiety decrease people’s quality of life. Often, if someone is the parent of a young child, the anxiety disrupts sleep and affects cognitive functioning, and really means a decrease in overall health and quality of life.”
Ironically, high levels of anxiety can impede the ability to parent while low levels may motivate a patient to follow guidelines for healthy living, such as diet, follow-ups, smoking cessation and exercise, Krigel says.
Despite its prevalence, FCR has been poorly addressed in clinical care, with few studies offering options for coping.
Power of Fear
In 2014, Sara Hughes, Ph.D., was about to embark on a new life as a college professor when she was diagnosed with breast cancer at age 33. “I had to turn down a job offer the same week I was diagnosed,” she says. “I couldn’t teach full time, but I did work part time while undergoing 16 rounds of chemotherapy and then a double mastectomy.”
For Hughes, the decision to undergo a double mastectomy came from FCR and her age at diagnosis. “I wanted to be aggressive so I didn’t have to worry about it coming back.”
Despite everything going well, Hughes says she still has panic attacks, thinking she feels something that isn’t there. She goes to the oncologist every three months, but still finds herself responding to “triggers” that result in a panic attack.
“I had a bad panic attack when a friend, who had gone through chemotherapy at the same time as me, died. We finished chemotherapy, and her cancer came back in two years. She didn’t tell me. I leaned on her a lot when I was sick. My mom, twin sister and husband helped, but she was the friend going through it at the same time.”
Hughes says the friend she lost was the person who gave her important information about diet and other tips, such as which toothpaste to use to prevent mouth ulcers and the name of the person who had wigs that looked real. She found a therapist the week after her friend died and began attending regular one-on-one sessions to talk about the fears that accompanied her friend’s death. She wasn’t comfortable in a support group and came from a family that didn’t talk about negative emotions.
Looking for professional help is the correct decision, Krigel says, because when the fear can’t be managed in a few weeks, it’s time to bring in the experts. Hughes knew she needed to talk to someone from the outside since her family dynamic made it difficult to talk about painful topics.
In addition, Hughes has found exercise and writing to be good forms of therapy. Writing poetry, she says, is very beneficial. “If I am in a situation where I can’t get to the gym, I write poetry. If it isn’t publishable, hopefully it will be something I can turn into essays or articles for other women.”
Hughes doesn’t have children, a decision she and her husband made early in their marriage, so her fear is not about leaving children but about being a burden on the people she loves should she become ill, she says. “I am very independent, and my other fear is that I won’t be able to do what I want to do. I am a writer and just got my first book of poetry accepted for publication. Cancer took a year and a half of my life, and I don’t want to lose any more time.”
A Mother’s Worry
Amberly Connolly, already with a toddler at home and pregnant with twins, found a lump in her breast at age 28. Reassured it was nothing by her doctors, the Omaha, Nebraska, nurse learned when the twins were 12 weeks old that it was cancer. She had a double mastectomy, six months of chemotherapy and a year of Herceptin (trastuzumab). At the same time, she was focusing on her master’s degree in nursing Connolly went on to have three more children, in addition to adopting her 9-year-old niece. Now a mother of seven with a doctor of nursing practice, she focuses professionally on issues of parental cancer, such as the need for respite care for parents and children.
She also has been active in Camp Kesem, a nationwide community of camps led by college student leaders that support children through and beyond their parent’s cancer. However, her fear of recurrence began to increase as she met other young mothers through the camp and realized how often they died from cancer.
“There was a lot of confusion when I was diagnosed. No one breaks it down,” she says. “In my mind, I had a 95 percent chance of survival, which sounded good, but as time went on, I met more women with breast cancer and others diagnosed with recurrence, and then I realized that 30 percent of all women diagnosed with early breast cancer have a chance of recurrence.”
Her fear built with more knowledge about women and disease. Then, she had a bout of pneumonia after the birth of her second post cancer baby, which became cancer in her mind, she says. “My triggers have become anything wrong with my health or stories of other women with similar diagnosis or when a young mother dies.”
She says her coping mechanism is to try to make every day count, which is important whether you have been diagnosed or not. “I trust that there is a plan for my life. It changes my perspective.” She follows up quickly with anything that appears abnormal. She can’t get life insurance because of the cancer and a preexisting condition of epilepsy, so she fears for her husband coping if she dies.
Her children, the oldest of whom is 12, spend time at Camp Kesem in the summers and know other children whose parents have had cancer. “It gives them a perspective of how serious cancer is, but they have not let me know they see that.”
Moving Through and Beyond
Krigel says triggers are normal and, while they are different for every person, understanding them can lead to taking preemptive steps to manage the fear before it gets out of hand. “It can be a smell, an anniversary date or hearing someone passed away,” she says. “This is normal, but if the feelings persist, it may be time to call your health care professional to identify the fear and take steps to cope and receive affirmation that you are not losing your mind.”
Krigel says she gives patients some coping recommendations that can be applied no matter where they are, with the most important being an understanding that informed patients are empowered to make changes that help them manage FCR. Study results have demonstrated that taking action by working toward wellness — such as increasing exercise, eating healthier, being mindful and doing yoga — is helpful.
She recommends to her patients that they do something they enjoy daily, even if it is only for 15 minutes. Be social and work toward having meaningful relationships with others. Work on being comfortable with uncertainty.
Krigel says it is important to get an accurate understanding of your possibilities for recurrence and what symptoms you need to follow up on. If you have a plan, the future may not be as scary. Talk to your oncology team about what you can do to lower your risk of recurrence so you feel like you are in control.
“Being informed about FCR and what you can do about it can empower you to take steps toward lessening it, working toward wellness and learning to coexist with a low level of FCR,” she says. “The goal is to manage FCR by making it work for you.”