I am arguably one of the last people you want to meet in a hospital. I am a Pediatric Oncologist; I take care of children with cancer. If I’m walking into your room, someone is at least concerned that a cancer might be a cause for any symptoms your child is experiencing. How do you even begin to prepare for that kind of shock?
The severity of a diagnosis of cancer in children overshadows its frequency. The reality is that there are about 15,000 to 16,000 children (0-18 years old) diagnosed with cancer every year in the United States. Considering there are over 70 million children in the United States, cancer in children is, fortunately, extremely rare. For context, there are over 360,000 cases of breast cancer, 320,000 of prostate cancer, and 200,000 of lung cancer diagnosed in adults every year in the United States. While a list of unpleasant diagnoses flashes in my mind every time my kids say “My belly hurts!” it’s exponentially more likely that they just need to poop than have cancer.
It is also worth noting that the term “childhood cancer” is misleading. There is not one childhood cancer but over 100 different cancers that children can get. No matter how rare, though, these diagnoses are devastating to both the child and the family, and cancer remains the leading medical cause of death in children. Each cancer is unique, so it is unlikely that there will be a single cure for childhood cancer. Support for research into the various cancers that can affect children is sorely needed, as only 4% of all federal funding for cancer research goes towards childhood cancers. Thanks to research, however, there have been significant advances in the treatment of all cancers and while some are considered universally curable and others have no effective treatments, we cure over 85% of children diagnosed with cancer.
So how can parents prepare for something this rare and life-altering? While I will leave it to the readers to determine how much time and attention to dedicate to something this rare, the truth is, I am not really sure one can prepare for something like this. In contrast to many adult cancers that may be influenced by “healthy choices”, we don’t have a great understanding of what causes the cancers we see in children. Use sunscreen to avoid skin cancer; don’t smoke to avoid lung cancer, etc. With kids though, essentially, they haven’t been around long enough or done enough damage to their bodies to cause any particular type of cancer in these common ways. For lack of a better explanation, childhood cancer is bad luck. Mind you, healthy choices help reduce the chances of a host of maladies and several adult cancers, but we don’t really know why some kids get cancer.
The early symptoms of most cancers are quite vague and very common: pain, fever, feeling tired, bruises, a lump. Can you remember the last time your children didn’t have one of these? Usually, the cause of these symptoms is just “a virus”, “growing pains” or “kids being kids.” Keeping track of these symptoms, seeing a pediatrician, following their recommendations and following up with the pediatrician — ideally the same one, if things don’t get better in a couple weeks, is key to sorting through the common, “no big deal” self-resolving things that all children get and something more serious that warrants being referred to a specialist like a Pediatric Oncologist.
I cannot emphasize enough the importance of having a medical team you trust, that knows your child, and with whom you can partner to do what is best for your children. One that doesn’t overreact or under-react. As with every profession, there are ranges of skills and styles among physicians, and finding the right fit for you and your family is key. Try as best as possible to avoid using “Doctor Google” or “Doctor ChatGP.” It will drive you nuts and is potentially dangerous. Medicine is starting to integrate artificial intelligence, but we simply aren’t at a point where AI can reliably navigate itself without physician involvement. The exact same condition and symptoms, worded just slightly differently in an AI engine, can yield polar-opposite recommendations that can be extremely dangerous, whether inappropriately reassuring you or needlessly terrifying.
This gets to, perhaps, the best we can do to try to “prepare” mentally for any such major medical event as a child being diagnosed with cancer.
As parents and individuals, we need to figure out how to work within the medical system. The medical system is absolutely flawed, but it is what we have. A diagnosis like cancer will shake even the most resourceful and resolute among us. It feels like stepping into another dimension. Your entire world gets flipped upside-down. You learn about things you had no clue existed, and you become inundated with information of varying quality from the medical team, well-meaning family and friends, and your own attempts to make sense of it all. Clear and honest communication with and from your medical team will be essential.
When to stay close to home versus seeking second opinions or go with standard therapy versus a clinical trial are all things that are unique to each patient and can’t be determined ahead of time but are the sorts of things your medical team will help guide you through.
Chilren’s cancer is the kind of thing nobody wants to think about, and realistically, it is rare and there isn’t much that we know can be done to prevent or prepare for it, but know that there are people out there that have dedicated their lives to helping children and families navigate this journey nobody wants to take.
