How to manage the fear of cancer recurrence

Overcoming cancer or completing treatment can make many survivors feel like they’re on top of the world. But there’s another very real, raw emotion that cancer survivors feel as well: fear of recurrence, or fear of cancer coming back.

While fear of recurrence is normal among cancer survivors, grappling with that fear can be difficult, especially when you just want to move forward in your life.

To learn more about fear of recurrence and how to manage it, we tapped the experts: Sarah Stone, senior social work counselor in our Gynecologic Oncology Center; Traci Newsom, senior social work counselor at MD Anderson League City; and Jordan Green, social work counselor in our Adolescent and Young Adult program.

Anxiety about the unknown is normal

People who experience fear of recurrence often have anxiety about every pain, discomfort or sensation they have in their body.

“Someone could have a pain in their foot and immediately think their cancer has come back,” says Stone. “Even though logically they know it’s not cancer, they still have that irrational fear.”

Any new pain can also trigger a similar response.

“A lot of times, if a person experiences a new pain, they associate it with one of their previous cancer symptoms,” says Green. “They can begin to spiral thinking this is the return of their cancer.”

A lot of the anxiety stems from individuals not trusting their bodies.

“I’ve had several patients who tell me they experienced a lot of side effects from their chemotherapy treatments, and if they had to go through that again, they don’t know if they could handle it,” says Green. “It’s a whirlwind of anxiety where they get stuck thinking they won’t know what to do when in reality they’ve already accomplished so much. They have the coping skills, the strength and the supportive team. It’s just about getting in that mindset.”

Adolescents and young adults face unique challenges

Green, who works with patients ages 15 to 39, says being diagnosed with cancer at a young age often presents its own challenges when it comes to fear of recurrence.

“A lot of the fear is, ‘I didn’t have any control over it the first time, so what am I supposed to do if it comes back?’” says Green. “Because of this fear, many adolescents will stunt their personal growth. They choose not to go back to school, avoid making friends or starting new relationships because they fear if the cancer comes back, they’ll lose all of these things.”  

A lot of the focus goes on reframing the mindset from one of doom to realizing not everything is a recurrence.

“It’s a lot of one symptom, one pain, one day at a time,” says Green. “It’s one single moment at a time of ‘I can trust my body that this cough is just a cough.’”

In MD Anderson’s Adolescent and Young Adult Clinic, Green and her colleagues build relationships with patients during counseling sessions, which include Cognitive Behavioral Therapy to help reframe thoughts about recurrence.

“We help them understand that sometimes they just have a cold or sometimes they’re having a panic attack because they’re anxious,” says Green. “We teach them the difference between physiological symptoms and what is just kind of in their head.”

Recognize your triggers

People who don’t necessarily live with the fear of recurrence every day can still be triggered by certain things.

“They could be getting along just fine, and then something might happen, whether it’s the anniversary of their cancer diagnosis, upcoming scans or even a commercial on TV about cancer,” says Newsom. “It triggers that fear and takes them right back to a place of anxiety.”

Every person is different, so it’s important to learn how to recognize your triggers so you can manage them.

“When you’re triggered, stop what you’re doing and implement some kind of coping mechanism, whether that’s taking five deep breaths, going for a walk, or calling a friend to distract you,” says Newsom. “If you’re aware of what triggers you, you can better manage them. Because triggers will happen.”

Learn effective coping strategies  

One way to cope with the fear of recurrence is to focus on what you can control.

“You can’t control whether cancer returns, so instead, focus on what you can do to support yourself in other ways,” says Stone. “Do things that make you feel good, like getting enough rest, spending time in nature, singing, petting dogs, laughing, participating in hobbies or spending time with loved ones.”

Anything that can help you stay in the present moment and not worry about what could happen in the future is best.

“Many people in the cancer survivorship support group I facilitate talk about the importance of gratitude, and when they’re feeling overwhelmed, it helps them to focus on the things they have to be grateful for,” says Newsom. “A lot of them keep a gratitude journal, so in moments of anxiety, they get it out and remind themselves that they have so many great things going on in their lives.”

Finding a coping strategy that works for you doesn’t have to be a massive undertaking; it’s easier to start small.

“Do one thing a day that's just for you – not for your significant other, your spouse, your children, your caregivers or your medical team,” says Green. “It could be working toward a personal goal or just sitting outside watching the sunrise while drinking your favorite cup of coffee. Being able to choose to do something you enjoy is a great way to start your day.”

Resources and support at MD Anderson

If you or a loved one is struggling with fear of recurrence, MD Anderson offers many resources to help. Some of these resources include:

• Support groups for patients, caregivers and survivors
• Social work counselors you can speak with about your fears
• myCancerConnection, a one-on-one cancer support community for survivors, patients and caregivers
• Active Living After Cancer, a 12-week program aimed at improving the quality of life for cancer survivors by promoting physical activities and providing survivorship support
• The Learning Center, a patient education library that offers information on cancer prevention, treatment, coping and general health   

Request an appointment at MD Anderson online or by calling 1-877-632-6789.