Childhood cancer is a *chronic* condition. The journey doesn’t end when treatment ends. There are still many physical, emotional and psychological issues that exist when a child is either in remission or declared NED.
New England Journal of Medicine recently published a study by Kevin Oeffinger et al. entitled “Chronic Health Conditions in Adult Survivors of Childhood Cancer” which summarized the following:
“It has been reported that less than 20% of adult survivors of childhood cancer are followed at a cancer center or by an oncologist; the likelihood of follow-up in this setting decreases even more with time.” “Several key chronic conditions associated with cancer therapy, such as late-onset cardiomyopathy associated with previous anthracycline exposure, may remain clinically silent for long periods before becoming clinically apparent. Other conditions that may be underreported are osteoporosis, hypertension, and insulin resistance. Our list of chronic conditions, although comprehensive, is not all-inclusive; a notable omission is adverse mental health outcomes, an important component of morbidity after cancer in childhood. In summary, adult survivors of pediatric cancer who were treated in the 1970s and 1980s are a high-risk population. Thirty years after a diagnosis of cancer, almost three fourths of survivors have a chronic health condition, more than 40% have a serious health problem, and one third have multiple conditions. The incidence of health conditions reported by this population increases with time and does not appear to plateau. The monitoring of survivors is an important part of their overall health care.”
While this study pertains to survivors from a couple of decades ago, the information is important and pertinent to children diagnosed today. It can help us make better choices about less-adverse forms of treatment with good outcomes. And when that isn’t possible, it can inform parents/caregivers of possible adverse long-term effects so that changes in lifestyle may help minimize the impacts later on down the road.
The study did point out that it was following physical health conditions and didn’t note mental health outcomes. Leaving aside psychological issues [depression, anxiety, post traumatic stress syndrome, et cetera (which can affect any/all members of the family)], many children experience cognitive and/or behavioural issues associated with the treatment and experience which can cause problems in an educational (school) setting and parents/caregivers need help navigating that system [knowing what their rights are, knowing what systems can be accessed, where/who they could be speaking to in order to get that support, et cetera].
A study done in 2005 by Dr. M. Barrera et al. out of Sick Kids Hospital in Toronto called “Educational and Social Late Effects of Childhood Cancer and Related Clinical, Personal, and Familial Characteristics” noted the following results: “significantly more survivors than controls repeated a grade (21% vs. 9%), attended learning-disability (19% vs. 7%) or special-education programs (20% vs. 8%), had educational or other school problems (46% vs. 23%), had no close friends (19% vs. 8%), and were less likely to use friends as confidants (58% vs. 67%).” This study illustrates that childhood cancer survivors are twice as likely to deal with negative socialization effects.
What that all boils down to is that childhood cancer is a multi-faceted chronic condition that encompasses more than just physical effects. How do parents/caregivers cope with all of these issues? Where can they turn to to find information and gain perspective on this frightening new reality that the entire family finds itself in?
In my experience, it has been other childhood cancer parents that have assisted me. They have shared their wisdom, their triumphs and setbacks. They have pointed out to me various resources where I can find the information that I need when I need it. They have reassured me that I am not crazy and given me the strength to keep trying, keep pushing, when so many others were trying to convince me to give up. They have made a difference in quality of life.
For more than a decade now, my husband was having severe pains in his left leg (shin). He had gone to many doctors about this pain. I went with him one time to the doctor and asked them straight out if this leg pain could in any way be possibly related to his treatments for cancer as a child. The response I got was the doctor laughed in my face and said “He had cancer as a child. He’s CURED now. It is not related.” They x-rayed his leg and did blood tests looking for Lupus or arthritis and when those came back negative, he was told by the doctors that he was lazy and needed to get more exercise and that was what was causing his problems. As a result of that, my husband stopped going to doctors. He wouldn’t push the issue because he didn’t want to have yet another doctor tell him that he was lazy.
I talked to other childhood cancer parents and long-term survivors and met a man who had similar symptoms and explained to me what they had found. He urged me to keep pushing. Other parents validated my concerns and they too urged me not to give up. Because of them, I wouldn’t stop. I talked to everyone who would listen and eventually someone DID listen. It was the long-term follow-up nurse at Children’s Hospital [the one that my son was going to be seeing]. She made an appointment for my husband to be seen at a long-term clinic.
Even at the appointment, we were told that his pains were probably not related to his treatment as there had been no study evidence (at that time) to indicate issues showing up so far out of treatment; that issues should have shown up in the first decade after treatment. A CT scan was done, the results indicated that an MRI should follow. The results of which showed that he has two benign tumours growing out of the nerve sheath in his spine right in the middle of his radiation field. It is these tumours which have been causing the pain all along.
(As a side issue, chronic pain is an issue for childhood cancer survivors where very little research or help is available. Many parents/caregivers, as well as the children, struggle with this on a daily basis. A lot more needs to be done in this area.)
My husband continues to deal with his pain with a lot of “grin and bear it” attitude. He has tried medications; they didn’t help him. Because the tumours are benign, they don’t want to operate to take the tumours out as they are growing out of the nerve and there is a high risk of paralysis [at best, a numbing of the extremities; at worst, being completely paralyzed from the waist down]. While the pain is real and it is uncomfortable, he deals with it so much better now that he knows where it is coming from and why.
Knowledge can make us stronger than we were before.
I see childhood cancer support groups filling a void and empowering people with knowledge and support.
It is not enough to merely survive cancer, we need to learn to Live.
Our goal should not be to have our children just exist, but to strive to embrace Life and live it to its fullest.
