"Your child has cancer." These are words no parent ever wants to hear.
"You have cancer," is often a meaningless sentence to a child, but the fear and horror the child sees in his parents' faces and hears in their voices is unmistakable.
For parent and child, a cancer diagnosis is a mental shock. And the physical shocks that follow that diagnosis- invasive treatments, surgeries, radiation and chemotherapy are also difficult to bear, also potentially traumatising.
Cancer is a life threatening disease. And the threat to life- including the treatments to save life-can be traumatising to those who witness their child or sibling going through cancer treatment. Death of course makes it even harder. Treatment is also potentially traumatising to the child with cancer, potentially leaving psychic scars lasting well after a hopeful recovery.
Facing a series of repeated life threatening events puts each of this group (parents, siblings, and the childhood cancer patient as well) at risk for developing post-traumatic stress disorder (PTSD). PTSD is a disorder that is commonly associated with exposure to combat, natural disasters, or bodily assault.
PTSD in those who experience cancer, usually presents in response to feeling one's life or one's child/or sibling's life is under serious and/or repeated threat.
The symptoms of PTSD include:
•Re-experiencing the cancer treatment in nightmares, intrusive thoughts or flashbacks--scenes that are often reported to be much like full sensory movies playing unbidden in one's mind.
•Avoiding places, people and reminders of the cancer experience including shutting down sharing with others what one has been through.
•Negative changes in beliefs and feelings including feelings of guilt, fear, shame or losing interest in previously enjoyed activities and feeling alienated from others.
•Bodily hyper-arousal experienced as agitation, inability to fall or stay asleep, being easily startled, irritable, having difficulty concentrating and so on.
To qualify for a diagnosis of PTSD these symptoms must last for longer than a month and must significantly interfere with life functioning in relationships, work, education or other important areas of life.
In some cases delayed responses occur and in others only some of the features of PTSD occur. Or other related disorders arise such as anxiety disorder or panic, phobias or depression. Those who are suffer from PTSD are also at increased risk for substance abuse--as alcohol or drug abuse arises out of attempts to self medicate flashbacks and nightmares away.
Children who have PTSD often manifest their symptoms in ways that are unique to their developmental stage. For instance traumatized children may revert to wanting to sleep with their parents or go backwards on skills they previously mastered. They also often display a need to play and replay the cancer experience in attempts to master it. Or hyper-arousal may come across as aggression or misbehavior, especially in boys. Girls often go dissociative following a traumatic event--meaning their minds compartmentalize the event. They may say "everything is fine" and show no emotion but if someone where to measure their pulse when cancer is being discussed, they would see that their bodies are showing agitation. More loving touch, sleeping near to parents, and loving interactions with pets can help both adults and children to self soothe in the face of hyperarousal and posttraumatic re-experiencing.
When it comes to trauma children also often take their cues from their protectors. Parents who stay calm and who modulate their emotions well model to their children about how to cry over sad news, stay strong in the face of fear and self comfort, as well as seek comfort for overwhelming emotions. Parents who get hysterical or who shut down emotionally provide little support for children who have to navigate their own emotions and need help doing so.
The risk factors for developing PTSD in response to cancer include longer hospital stays, recurring cancers, invasive procedures such as bone marrow transplants, greater experiences of pain, previous traumas, previous psychological problems or high levels of stress in general. The protective factors against developing PTSD include a strong support network; help regulating emotions, and a good relationship with the medical staff.
PTSD following cancer should be treated sensitively. A child who is for instance triggered into fear states by the smell of a hospital or medical setting, or white lab coats needs help working through their present day anxiety while separating it from the pain or distress that went before. Children and parents may need help reframing present day thoughts that lead to anxieties and slow exposure to triggers to understand they are different (and safe) now, and help learning to calm.
The child patient as well as his or her siblings may develop more behavior problems than before the cancer treatment, become clingy or need help expressing anger versus acting it out. They may also want to avoid reminders of anything to do with cancer and even the medical system. In some case avoidance works to a certain point, but too much avoidance creates a cycle of trying to shut down only to have the painful re-experiencing start up again with another exposure to triggering reminders.
Families are strained when cancer is part of the picture. And each family member has their own way of responding to traumas--withdrawing, acting out, etc. adding an even heavier stress load on the marriage and family system. It can be hard for parents to meet the needs of everyone equally. Often the sick child gets all the attention and the siblings suffer and learn to withdraw or meet their needs outside the family creating complications later on.
Marriages are also at risk when one partner develops PTSD. For instance Stacey, a mother deeply traumatized by her young son's cancer diagnosis and treatment found that after a hopeful resolution of his cancer she could no longer sleep well and was plagued with nightmares, flashbacks of hospital procedures and flash-forwards of imagining a dire future--including the return of cancer and death of her son.
To cope with her psychological agitation Stacey started avoiding activities she previously enjoyed. She stopped going to her son's school or sports activities, didn't want to have sex with her husband or go out to dinner with their friends--responses that Jim, her husband found inexplicably painful. And when Jim became angry over not understanding that posttraumatic triggers were causing Stacey to "shut down" they would have painful arguments that resolved nothing.
Children and adults with PTSD do best to work slowly with help if needed, through their traumas by facing it in small steps and creating a narrative of sorts that works for them. One of the most painful parts of PTSD is dealing with a trauma that makes no sense and for which one has no cognitive frame--"You have cancer," is often too horrific a statement to accept. Or the suffering of a child in treatment is also too horrific to accept--at first. But over time, cognitive frames must be created in which one finds peace and accepts into one's life story that indeed this trauma occurred and now needs to be accepted as real.
Running away from it and living with the painfulness of cycling through flashbacks, avoidance and hyperarousal is no way to live. Medications in serious cases may be useful, and relaxation training is also helpful. Simply understanding what one has been through and that posttraumatic responses--even to cancer--are normal can help to work through it.
Most PTSD sufferers feel a sense of foreshortened future--that their lives will not be as long as previously expected or as fully lived. In some case that is the sad reality, but in others it is simply fear that needs, like the cancer, to be excised from the mind.
In the end, both the trauma and the cancer need to be accommodated and the sufferer must find peace in mind and soul with both--no matter the outcome.
Anne Speckhard, Ph.D. is Adjunct Associate Professor of Psychiatry at Georgetown University Medical School and author of several books. Her latest children's book is Timothy Tottle's Terrific Dream.