1. Worry doesn’t go away when cancer does.
While completing the final chemotherapy and/or radiation appointment is a huge milestone in the family’s journey, just because active treatment is over does not mean that the family is “out of the woods.” Active treatment can provide an easy focus for the family’s worry, and once that has completed, the family must transition to a new “waiting game.” We often hear that transitioning away from frequent hospital and clinic visits and decreasing interactions with the medical team can be scary, because “no one is checking” (on the treatment progress) as frequently.

It’s normal in this time period to continue to experience a variety of emotions, such as fear about cancer coming back, anxiety and/or anger. Families can benefit from continued support and check-ins from loved ones during this time. Distractions (e.g., mini vacations, going to the gym, having a babysitter for date night) can help families cope with the waiting.

2. It can take a while to transition to a new normal.
Patients and families have been focused on medical efforts for a prolonged time; it can take a while to switch gears. The medical team often becomes a part of the family, and no longer seeing them as often means the family isn’t getting the encouragement and social support they were used to. It can be difficult for the entire family to transition back into work and school settings because these settings tend to be faster-paced and less focused on each individual, which can feel like a huge change from the personalized interactions with medical staff.

Additionally, the child and family are now faced with making decisions regarding who and how to tell people about the child’s medical history. Finally, if there are new limitations or long-term physical or mental changes as a side effect to treatment, adjusting to these new aspects in the family’s regular daily life can take time and effort. It can be easy to assume that now that “cancer is gone,” everything will return to normal. For many childhood cancer survivors, normal looks different after treatment. Checking in regarding ways to help (e.g., installing accessibility ramps) can help families feel less overwhelmed by any new needs their child has.

3. Caregivers: Take care of yourself, too.
It can be easy to neglect your own needs when a loved one is battling cancer or transitioning to survivorship. When you feel like your loved one is in a crisis it’s common and often necessary to prioritize the patient’s needs. However, treatment is often a marathon, not a sprint, and it’s important to keep everyone balanced and healthy.

Just like they ask you to remember on the airplane, parents and caregivers are encouraged to put on their “oxygen mask” first before assisting others with the idea that if you are not taking care of yourself, you won’t be able to help others. This is true for many of life’s events and phases: If you aren’t taking care of yourself (e.g., eating right, sleeping well, getting social support) you will not have much energy to support others. Additionally, as patients are coming out of the most active phases of treatment, it’s common for caregivers to feel guilty if they begin to go back to regular self-care routines. It’s important to recall that whatever helps caregivers feel happy, healthy, and balanced will also translate into better care for patients.

4. There are many ways to cope.
A good rule of thumb is: “If it’s not getting in the way, it’s OK.” The process of transitioning from being an active patient to reintegrating back into the community and your previous roles can be challenging. It’s good for people to start getting back to basic tasks of daily living, like going to work and/or school, completing daily tasks, eating well, sleeping well and engaging with others socially.

As a support person (e.g., friend, coworker, neighbor, family member), check in with patients about how you can best support them. Visiting, talking, having a book club, going on outings, or just sitting and watching TV together can help with social isolation. Some people appreciate having a good listener to talk to about their feelings and experiences, while others prefer not to talk about the cancer-related experiences and instead talk about lighter everyday topics. Both preferences are OK. It’s pretty typical not to want to talk about cancer or not to go right back to previous activities, hobbies or friend groups; this does not necessarily mean that the child and family are not adjusting or coping well. However, it’s also common for transitioning back into daily roles and expectations to be very challenging – in this case, it can be helpful to talk with a counselor or psychologist.

5. What not to do
Don’t stop asking about how the family is doing; they may need your support now more than ever.

Don’t assume that the experience is over or the hardest part is behind them. For example, don’t say: “You must be so glad that’s over!” Instead, try, “How can I help as you guys move forward?”

Don’t assume everything will go back to the way it was before; sometimes long-term physical and mental effects from treatment are permanent or emerge slowly over time. Don’t say, “I knew everything would be OK; you are so strong.” Do try, “You guys are so strong and I’m still here for you in whatever ways you need.”

Finally, while the above tips can be useful, every family has their own experience of cancer treatment and survivorship. Let the family tell you what they need, and honor their wishes and requests. Don’t let concerns about saying or doing the wrong thing cause you to withdraw from the family. Apologize for missteps and keep showing up for the family – loved ones are vital throughout the family’s journey, including in their transition to survivorship.

Learn more
For more information regarding childhood cancer survivorship, please visit the following:
Our Childhood Cancer Survivorship Program
The National Children’s Cancer Society (NCCS)
Children’s Cause Cancer Advocacy Survivor Resources
Critical Mass

Susanne W. Duvall, Ph.D.
Assistant Professor, Department of Psychology
The Institute on Development and Disability and the Child Development & Rehabilitation Center
OHSU Doernbecher Children’s Hospital

Caroline J. Grantz, Ph.D.
Postdoctoral Researcher, Department of Psychology
The Institute on Development and Disability and the Child Development & Rehabilitation Center
OHSU Doernbecher Children’s Hospital