Category Archives: Cancer

Childhood Cancer and Posttraumatic Stress Disorder

“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 traumatizing.

Cancer is a life threatening disease. And the threat to life—including the treatments to save life—can be traumatizing to those who witness their child or sibling going through cancer treatment. Death of course makes it even harder. Treatment is also potentially traumatizing 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 posttraumatic 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:

  • Reexperiencing 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.

Too Young for Powerless—Cancer Through the Eyes of the Siblings

Comfort to sibs pix

“Scary”, “hard”, and “difficult” are words that youngsters frequently use to describe the feelings they have about cancer treatment of a sibling.  Watching a sibling lose weight, lose his hair, be hospitalized, etc. engenders fears of death that children left to their own devices are ill equipped to work through.  Siblings also often feel guilt, powerless, loneliness, anxiety, depression, anger, and jealousy.  Unable to understand what “cancer” even means—they know their sibling is sick, but they may not be able to understand why their brother or sister is getting so much extra attention, gifts, and invited to special events focused on them meanwhile their own feelings may be unintentionally discounted.

If these feelings are left unattended the sibling without cancer may end up with issues of their own.  They may stumble in their academic achievement or suddenly show misbehaviors.  Some siblings after the death of a sister or brother may suddenly also get “sick” often and need to stay home close to Mom or Dad—perhaps unconsciously wanting to be cared for and safe.  Siblings may also have trouble at school or in social settings when adults or other children express kind sympathies (adults) or awkward questions (children) that the sibling has no idea how to respond appropriately.

Sephora siblings week

During cancer treatment, or in a time of bereavement, a sibling may become super responsible and take on the role of caring for their distressed and often overwhelmed parent—a role that may be dearly appreciated during a crisis but shouldn’t be left in place for a long time afterward—as children need to be parented versus having this role reversed.

Mom and cancer kidChildren also want to believe that their parents are powerful versus powerless in the face of challenges and they may suddenly move into crisis finding their parents cannot prevent the suffering or death of their sibling.  These feelings of fear that a parent isn’t as strong as the child hoped may lead to inexplicable outbursts of anger or blame—words that a bereaved parent may not be equipped to hear in their time of grief.

Childhood cancer, treatment, and sometimes the death of a sister or brother, are extremely challenging events for a sibling to face.  When cancer strikes a child, a lot of things happen and fail to happen for the siblings at home—despite the best wishes of their parents who want all their children to thrive.

As parents support their sick child and literally engage in a life and death medical battle to save the child with cancer they may unintentionally overlook the emotional and even physical needs of their other children.  Healthy children may witness the physical and emotional pain of their loved one as well as the distress of their parents—often all without a good support system around them.

Good and loving parents may be too overwhelmed to explain things properly and children who are too young to understand concepts like “cancer” and “death” may find themselves floundering in a sea of anxiety for which there are not adequate supports in or outside of the family.  If the cancerous child is hospitalized out of town, parents may literally not be present to help the siblings work through their own adjustments to this very difficult challenge.

Children with cancer clearly suffer and may even die, but the overlooked siblings also suffer—from anxiety and sometimes even posttraumatic stress—with these issues displaying as nervousness, intrusive thoughts, nightmares, and avoidance which all need to be addressed—lovingly in the family or also with professional help depending on the need.

While the challenges of cancer, death, and bereavement, if the battle is lost are substantial, parents should recognize that their other children are also going to be deeply affected.  They can take steps to mitigate their other children’s suffering by turning to other family members, teachers, clergy, and even professionals to ask them to offer much needed support.  Siblings will need opportunities to sensitively talk with their parents and perhaps even with a grief counselor about what death means, if the cancerous child is likely to die, what the suffering is about and how to deal with a grieving and overwhelmed parents.  While it isn’t easy they will ultimately need to find healthy ways to grow through and beyond this difficult time in their lives.

Anne Speckhard, Ph.D. is Adjunct Associate Professor of Psychiatry at Georgetown University Medical School. This is the second in a series of blogs for Donna Speckhard’s initiative My Truth in 365 – A Virtual Journal Project on Pediatric Cancer.  Check out her site at and please donate to the cause….  http://mytruthin365.wix.com/mytruthin365#!Finding-Courage-Healing-in-Story-Telling/cke9/B75436BB-E716-4D13-BF7A-447C9F84E58B

Finding Courage & Healing in Storytelling

Journaling picture

The human mind likes to categorize events. When we have new experiences our brain searches for matches in order to help us formulate the proper response. Particularly when we have previously encountered danger the brain gives these events high priority and quickly activates if there is a match—to warn us to take caution if there might again be danger—to fight, flee or hide if necessary.

Our mind’s system of pattern matching also helps us to make sense of new experiences—placing the memory of new ones alongside others like it.

But what about if we encounter something completely new—a threat we never expected could strike us?

What if it’s childhood cancer and we have neither a match for that in our past experiences nor any expectation of cancer striking one of our young and beloved family members?  What then?

The mind, when confronted with any serious threat to life or limb, or witnessing of such a threat to others, goes immediately into high alert and tries to find a way to categorize it. But if there is no pattern match and the emotions are horrifying enough we either: freeze in numb dissociation, flee in attempts to get away from the bad news and events, or we put up a fight.

This project is about journaling via film and it’s an opportunity to address all three of these responses and help us to shift out of the ones that are no longer working for us.

Fighters will tell about how they are putting up the good fight and give courage to others who are also in the battle. But when the fight becomes overwhelming and loss looms too near they may also need to move through the painful stages of grieving: denial, anger, bargaining, depression and ultimately acceptance.

When death occurs there are again the painful stages of grieving and accepting loss.  Parents and siblings need to talk through how hard it is to face letting go of dear attachments and while still honoring and remembering, finding a path to slowing filling up the gapping hole that is left behind.

Life constantly requires us to let go but this is so hard when it’s letting go of one’s own child. Telling our stories can help to share the burden, to put words to this overwhelming grief and to find ways to rebuild when one just wants to withdraw and give up.

Those who have taken flight or who are numbly frozen in place—having fallen into depression, grief, avoidance, alienation or a numb dissociative state can find their way back into relationship by talking through their experiences and listening to others. By doing so they learn that they are not alone, that others understand, and that they can draw courage in community. They will find words for what they’ve been feeling and in doing so work through the confusion of being emotionally overwhelmed by a threat and potential or actual loss that seems too large to bear.

Traumatic news and traumatic bereavement often causes us to feel like we are experiencing life in little snippets of horrifying news and experiences. Narrating the journey can help us pull those snippets together into a coherent story that we can then search for answers to make sense of it, share with others, mull over and eventually come to peace with—no matter the outcome.

By telling our stories we will find our way through this experience, place it in the context of the human community and hopefully make friends, encourage each other and honor the ones who are in the battle and those who have moved beyond it.

Recently, a young person in the Washington, D.C. area succumbed to a type of childhood cancer. In the wake and aftermath of that person’s death the school’s counselor expressed concern that that there weren’t more parents of classmates seeking grief counseling for their children who were also deeply affected. Perhaps the parents felt a stigma, were overwhelmed with other priorities, or simply didn’t see the need.  But the truth is—when cancer strikes, whether a death occurs or not—it impacts more than just the family. It also causes a ripple effect of concern, confusion, sadness, and even horror through the ranks of classmates—close friends and acquaintances alike—who may be too young to make sense of this difficult experience.

Life continually challenges us. Journaling is one approach and outlet to advance healing within families and classmates as well. Telling our stories and finding community and coherence by doing helps us to stay centered and heal from the things that are so silently piercing our hearts.

Pick up your journals and i-pads and join us on a healing journey!

Anne Speckhard, Ph.D. is Adjunct Associate Professor of Psychiatry at Georgetown University Medical School. This is first in a series of blogsfor Donna Speckhard’s My Truth in 365 – A Virtual Journal Project on Pediatric Cancer http://mytruthin365.wix.com/mytruthin365#!Finding-Courage-Healing-in-Story-Telling/cke9/B75436BB-E716-4D13-BF7A-447C9F84E58B