Childhood Cancer: the part we are not talking about

Sixteen years after my diagnosis with choroid plexus carcinoma (brain cancer), I finally came to my rite of passage as a cancer kid: I exited the children’s hospital into the seemingly giant hospital for adults. 

This world smelled better and the waiting rooms looked nicer, but the popsicle selection was subpar. One of the first things left behind that I most certainly did not miss: being talked down to. At 18, I was not used to people being forward with me, but on my first visit to my new hospital, the nurse was plain and direct. 

“You are at risk for binge drinking,” she said pointedly. “Be careful.” 

Having just met her, it seemed disturbingly frank at the time–but over the years, I’ve come to understand what she meant.

The connection between childhood cancer and substance abuse

Recent research has found troubling connections between cancer survivors and drinking. The National Health Interview Survey discovered an alarming incidence of alcohol consumption among cancer survivors. Over half of those diagnosed with cancer consumed alcohol, with about 20 percent included in the binge-drinking category (four drinks a day for women and five for men). Survivors of childhood cancers, like those with CNS (central nervous system) tumours, had alcohol consumption rates markedly higher than most other survivors. In general, 73 percent of CNS tumour survivors consumed alcohol, with 23 percent considered bingers.

Let’s compare these numbers to the regular population: According to the CDC, one in six (or about 16.6 percent) U.S. adults participate in binge-drinking. Four—or, in the case of CNS tumor survivors, seven—percentage points might not seem like a huge difference. However,  there is a large cause for concern for those in remission due to the strong link between alcohol consumption and cancer. Early studies indicate even moderate drinking increases chances of recurrence. Given the risk, doctors are baffled as to why cancer survivors are partaking in such a harmful activity as drinking, especially at these levels. While research is inconclusive as to the cause of these risky behaviors in survivors, the debate has shifted the focus to holistic modes of care. Researchers like the team at the Journal of Oncology have gone as far as advocating for multidisciplinary teams to assess both the physical and social realities of cancer survivors, particularly for teen survivors.

The physical severity of treatments on cancer patients is difficult. Researchers connected depression with cranial radiation, a form of treatment common in cancer therapies, finding that “survivors who received any radiation as part of their treatment were reported to have more behaviors indicating depression/anxiety, attention deficit, antisocial behaviors, and diminished social competence” compared to those who only received surgery. For children as young as I was when I received it, such intense treatment can cause serious harm to neural development, possibly leading to certain risky behaviors. 

The psychosocial effects of childhood cancer

The stresses from cancer are astoundingly traumatic: Specific posttraumatic stress disorder (PTSD) symptoms affect nearly 75% of youth during or after treatment. Hospital stays, possible recurrence, being surrounded by death at a young age—these events are genuinely traumatic. Thinking back, the idea that I needed to grapple with the concept of mortality before I had even grown in my adult teeth is unsettling. Even having survived cancer, dealing with the fear of reoccurance is an ever-present stressor. Studies find anxiety and depression can actually get worse for those in remission as they come to terms with life and the spectre of cancer. 

While experts continue to study the genetic and biological connections between alcohol and cancer, the very real connection between substance abuse and stress has been studied since the 1980s. Internalized childhood stress rears its ugly head everywhere, at school, with family, and ultimately, in the bar. How a survivor chooses to deal with the stress reveals different behaviors. For some, that may mean hypervigilance over their health conditions, and many survivors do present severe health anxiety. Others may become avoidant of hospitals, health responsibility, and safe lifestyle practices. Avoidance as a coping mechanism has a history of creating risky behaviors like binge drinking

Seen as a reaction to the stresses of living with cancer, it is no surprise those survivors with the highest incidence of binge drinking also reported “good” health. This is the camp I definitely belong to: Admitting illness opens a door to testing, needles, blood, and so many things I wanted to avoid my whole childhood. Hilary Marusak of Scientific American illustrates how significantly this lines up with symptoms of PTSD:

“Posttraumatic stress symptoms may include nightmares or flashbacks, a desire to avoid people, places, or things associated with the experience, a difficulty in feeling emotions, feeling helpless, distant, or cut off from others, and feeling anxious or easily startled.”

Both anxious and avoidant responses are rooted in the traumatic stresses of living post-diagnosis. I am one of the lucky ones, not just being in remission, but escaping the most extreme treatments like radiation. But for the rest of my life, I will have to cope with risks to my health I could have never imagined before. Binge-drinking is a very real threat, a byproduct of growing up in a hospital. 

But that’s the part they don’t tell you about childhood cancer. It isn’t just beating the disease that makes you healthy, but surviving the aftermath.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: