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Embracing Survivorship as a Family

Just as most patients have concerns and worries when treatment ends, many children also experience uncertainty and fear when a parent finished treatment for breast cancer. Children may be apprehensive and worry about mom's long-term health.  They may also be sad or resentful at all of the changes at home. It is very common for everyone in the household to want and expect their lives to return to a sense of normalcy as soon as possible following a family member's treatment for cancer.

Francis Lewis, RN, MN, PhD, a behavioral scientist from the University of Washington, Seattle, warns that many parents devote too much time trying to teach children about cancer and not enough time listening to their thoughts and feelings.  "Don't be a biology teacher," she urges gently.  It is important that children are given the opportunity to speak openly about how they are coping with all of the changes since cancer entered the family. Schedules turned topsy-turvy, mom feeling terrible, others coming to the household to help with the caregiving can all be upsetting and disturb the normal routine.

It is often recommended that parents should approach communication with children regarding breast cancer and survivorship with careful honesty.  They do not necessarily need to know all the details about cancer or prognosis. At the same time, it is helpful to create space for them to ask scary or embarrassing questions, express their own concerns, and try to reduce any anxiety, confusion, anger, or fear they might be feeling.

Below are some tips to help the entire family through this transitional period:

  • Healing takes time. It is important to remember that when treatment ends, returning back to routines may take some time. Recovery does not have a term limit, and the challenges that each patient faces to reacquire their own sense of normalcy (physically adn emotionally) are different. Specifically, this may mean that extra help is still needed with tasks such as childcare, cleaning, and meals in the weeks and months following treatment.
  • Set clear expectations. Even the most intuitive and well-adjusted kids experience lots of emotions after a family member is treated for cancer. Parents should talk openly about what can be expected directly following cancer treatment, and allow themselves time to recover.
  • Find positive (and fun) fill-ins. When mom and dad are forced to miss routine family activities that children have grown accustomed to, this can be frustrating for everyone. Whenever possible, try to make accommodations for children that they can look forward to - such as time with a visiting relative or a sleepover at a friend’s house.
  • Protect family time. Create a “new normal” that incorporates the patient’s energy level at that particular moment. Fatigue is a very common side-effect after treatment and can vary from day to day. This may mean that families find new ways to spend time with each other such as “movie night” at home, snuggle time with a book, or board games, instead of going out and doing more strenuous activities.
  • Include everyone. It’s also important for children of cancer patients to feel included in the care plan. Find age-appropriate ways for children to help out without over burdening them. Endowing kids with responsibility not only helps them feel that they are helping mom heal; it also may help distract them from feelings of anger or resentment from disruption of important routines. For example, families can have “backwards night” where the child reads the bedtime story instead of the parent.
  • Speak to a professional. Some children find it helpful to speak to a social worker or psychologist who is familiar with how cancer impacts children. There are also many age-specific support groups, online websites, books, and camps for children who has a parent diagnosed with cancer. Ask your cancer center for suggestions.

The good news is there are lots of research studies showing that children are resilient and do very well if they understand what is going on and what they can expect.  Finding age-appropriate explanations as well as ample time to listen may help children adjust to cancer and how it is affecting the entire family. Most importantly, talking openly in an age-appropriate manner and offering kids lots of reassurance is critical for helping the family move beyond cancer.

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