Read an Excerpt
Childhood Cancer Survivors
A Practical Guide to Your Future
By Nancy Keene, Wendy Hobbie, Kathy Ruccione
Childhood Cancer GuidesCopyright © 2012 Childhood Cancer Guides
All rights reserved.
From the time of discovery and for the balance of life, an individual diagnosed with cancer is a survivor.
— National Coalition for Cancer Survivorship
MANY OF the 12,400 children and adolescents (under age 20) diagnosed each year with childhood cancer can now be cured. Survivors of childhood cancer often find that the illness and its treatment changed their lives in many powerful, and often positive, ways. There is much to celebrate.
However, long-term survivors of childhood cancer face an uncertain future. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children sometimes affect growing bodies and developing minds. Complications from these treatments may occur later in life and are known as late effects. In addition, some survivors encounter job discrimination, difficulties obtaining insurance, and emotional or social difficulties.
During your (or your child's) journey through the many phases of survivorship, you may find yourself educating your family, friends, and healthcare providers about your physical and psychological responses to treatment and its aftereffects. Knowing about your disease, its treatment, and potential late effects will help you advocate for the care you need to maximize your health and well-being.
This chapter discusses some of the many facets of survivorship. It covers the transition from active treatment to going off treatment. It also discusses the shift from childhood to the independence of adulthood. To take charge of your health, you need to collect information about your treatment and then assemble a team to help chart your medical course. This chapter discusses ways to find the best healthcare providers for your unique needs.
You are part of a growing community of children, teenagers, and adult survivors of childhood cancer who are pioneers in the post-treatment journey into adulthood. In the months and years after treatment ends, you may encounter physical late effects, emotional upheaval, and unexpected benefits. Your journey may be easy or hard. It may take surprising turns and dips and reach dizzying heights. Although thousands of others are making the same journey, your path is unique.
I'm a long-term survivor of Hodgkin's disease. I think you have to recognize the cancer as part of your history, absorb it into yourself, and hopefully grab some of the good things it has given you — a feistiness, a capacity for great compassion. You also have to be able to not let it overwhelm you with fear and anxiety so that it's all you can think about. How do you walk this line? If you don't think about it and don't let yourself be identified as a cancer survivor, then you can't protect yourself if you go in with late effects. You have to be able to say, "I may only be 28 years old, but I had radiation to my chest when I was 15 and I'm at risk for heart disease now." But then, you also don't want to become so obsessed that you start to define yourself as a cancer patient rather than a person who just happened to have had cancer. It's sometimes hard to strike that balance.
Life for all people is sometimes rocky and sometimes smooth. Being a survivor may throw a few unexpected stones in your path or may pave the way to new opportunities. Many survivors talk about how cancer opened their eyes and left them with an appreciation for life. They are able to shake off the small stuff and focus on the important things in their lives. They feel as if the cancer gave them perspective, and that this is a great gift. Others feel that the cancer was one small part of their lives and they prefer not to think about it. As time goes by, your feelings about the experience may change.
We are all walking down the same path, but we are at different places on it. The first few months after treatment, I had a deep feeling of gratitude for every day that I was alive. I did reach a point, however, when I had to let myself be thoroughly pissed off at the trauma from the diagnosis, treatment, and recovery. I am coming to realize that these negative thoughts are normal and are due us from time to time. I am learning to walk the middle of the road, to not be such a perfectionist. That is coming with time. I have been on the elated end of the spectrum, and I have also spent many days in the basement of life (generally while returning to "normal life" post-treatment). It is a humbling, enlightening, lively experience.
* * *
I think that everyone should try to learn from every experience in their life. But being a survivor is not the whole part of my being. I am also a student, a teacher, a daughter, a granddaughter, a girlfriend, a visionary, a historian, and a sugar addict (among many other things). But sometimes people see you as just a survivor and nothing else. I want to be a survivor. I just want to be Andrea as well.
* * *
I've never really dealt with having cancer. I really didn't want to think about it. I felt like it was a defense mechanism because I didn't have the physical energy to deal with it. I went to a support group meeting once and felt like it was getting thrown in my face when I just wanted to forget. I feel bad sometimes because I think I should be giving back in some way, but I'm just not strong enough.
* * *
I had a brain tumor when I was 10. I'm pretty short (4'6") and skinny. I'm in a wheelchair. I can feel my lower body, but I can't walk. Sometimes it bothers me. It was bad enough to have cancer, but then to be in a wheelchair too. I used to love to dance and I can't do that anymore. It's hard when I go to weddings. But my dad always told me to have a positive attitude. He said it could always be worse — I could be in bed all of the time. So basically I have a positive attitude and think good things can come out of it.
* * *
I had leukemia when I was 15, over 20 years ago. I feel like it put me on a fast track and that I missed a lot, but I gained a lot too. I missed quite a bit of high school and lost lots of friends. I became very serious and matured quickly. I had different interests and just didn't communicate the same as the high school kids. But I graduated, went to college and graduate school. I made friends with people who are goal-oriented but relaxed. I have a wonderful wife, three healthy kids (19 months apart — no fertility problems there!), and lots of good friends. I have a sense for how fragile life is and I make the most of it.
Part of surviving childhood cancer is dealing with and educating medical personnel, family, friends, and loved ones about the medical and emotional aspects of survivorship. You may find that family members want to pretend that it never happened. You may be told to put it all behind you. Or you may find people treating you as if you are a fragile piece of glass. Deciding what parts of your cancer history to explain and what parts to ignore may take some reflection, and will certainly involve planning how to communicate your thoughts and needs to loved ones. This topic is discussed more in Chapter 2, and Chapter 3.
I have had so many people say to me, "Why don't you put it behind you and get on with your life? You're done with that now." Am I? Am I really done with that? You're going to tell me I'm done with that when every day of my life when I'm getting dressed I have to look at that laparotomy scar. I have to take all kinds of pills daily. I need to prevent and immediately treat infections because I don't have a spleen. The radiation killed my thyroid. If I get the flu, it might just be the flu, but we have to treat it with aggressive antibiotics and supportive therapy because it could be a lethal post-splenectomy infection, and those kill within hours. Pretty hard to ignore.
* * *
Is the cup half empty or half full? I fully believe it is half full. I live each day thankful that my son is here, thankful that there is a treatment for his cancer, because if this were the year 1949 instead of 1999, he would be dead. This is so scary, it always makes my heart skip a beat and my eyes tear and my mouth go dry. And it makes me go in the next room to look at him, to make him smile, to run my eyes over this marvel that is him. And it makes me wonder why any of us are alive, so I think of things that are beautiful as I go through my day: my lovely chaotic daughter, my clowning stable husband, my furry soft cat, my old and very sweet dog, my young and full-of-life puppy, the cool-looking clouds in the sky, the way the bare branches of the trees are outlined against the pink sky at sunset or the pale blue winter day sky, the sound of my favorite songs, the feel of my sweat and my muscles when I work out, the warm shower and good-smelling soap, fresh bread coming out of the oven, the banter of my family as we gather in the living room before dinner.
And in an odd way I am thankful that something woke me up to the wonder that is life. I am only so sad and angry that that something was cancer.
* * *
We choose life and not what might come with the future. Even though I'm currently disabled by the late effects of treatment, I don't waste time regretting the decisions that my parents and I made in 1972. We made the best-informed decision at the time, and for most of the 28 years post-treatment I've been very healthy.
* * *
My 8-year-old daughter Katherine is more than 5 years out from a bone marrow transplant. She had juvenile chronic myelogenous leukemia. She has some very manageable long-term effects from total body radiation (cataracts, subtle learning disabilities, sterility). For the most part she is a normal, happy, active girl who along with her brothers is the joy of my life.
* * *
I have been told many times that I had a "good" cancer; one doctor even went so far as to say my cancer was a "cupcake." No cancer is a good cancer, and no treatment is without its harmful effects. But in my mind having a "good" cancer meant that the treatment couldn't have been so very bad and certainly that it didn't carry any long-term risks. Since I wanted to believe, needed to believe that I had emerged unscathed, I blithely went along with this version of reality. Trying to make light of cancer by calling one or another of the curable cancers a "good" cancer does a disservice to me and my physicians. It disarms us in the face of potential late effects and makes us less effective in monitoring our health.
According to Webster's New Collegiate Dictionary, transition is a "passage from one state, stage, place, or subject to another." This definition expresses very well the road that survivors of childhood cancer travel, from active treatment to off treatment, and then from off treatment to long-term survival. The definition also fits because "place" changes as the adolescent moves from pediatric healthcare overseen by parents to self-designed and self-monitored adult healthcare. These periods of change can evoke anxiety and require a period of adjustment. For survivors, transitions involve medical, psychological, social, and educational changes.
People cope better with transitions if a period of planning occurs before the change happens. The transition from cancer patient to survivor should be acknowledged by all healthcare providers, and the psychosocial and educational aspects of survival should be addressed. For instance, if a teen's medical care shifts from a pediatric clinic to an adult clinic without discussions about his understanding of his disease, he may still have only the information that was given to him when first diagnosed as a young child. This is hardly the amount or depth of information needed by a survivor entering adulthood who will have to advocate for his own healthcare and make wise lifestyle choices.
The following sections discuss going off treatment and moving from teen to adult healthcare.
End of treatment
The last day of treatment is a time for both celebration and fear. The protocol schedules and frequent appointments provided reassurance and structure. While most families are thrilled that the days of pills and procedures have ended, some fear a future without powerful medicines to keep the disease away. Concerns about relapse are an almost universal response, and family members often feel vulnerable after active treatment ends.
Many parents and survivors describe ending treatment as almost as wrenching an experience as diagnosis. Families begin to experience the gamut of emotions — from elation to terror — months before the final day.
I had a lot of anticipatory worry — it started about 6 months before ending treatment. By the last day of treatment I had been worrying for months, so it was just a relief to quit.
* * *
I expected to feel a profound sense of relief when treatment ended. The 6 months prior to ending treatment I felt almost euphoric. But when she was finally finished, I began to be unexpectedly fearful. I just started to worry. I didn't really relax until she was a year off treatment. Now weeks go by without me thinking of relapse, although I still think of the years of treatment frequently.
* * *
We were thrilled when treatment ended. I knew many people who felt that celebrating would jinx them; they just didn't feel safe. Well, I felt that we had won a big battle — getting through treatment — and we were going to celebrate that. If, heaven forbid, in the future we had another battle to fight, we'd deal with it. But on the last day of treatment, we were delighted.
Survivors and their parents should anticipate that after months or years spent going through the rigors of treatment, they will have lost the feeling of a "normal" life. They may experience relapse scares, and they may need to call the doctor to describe the symptoms and be reassured.
Several months after my son ended treatment, I was driving down the street, and I started to worry that he seemed excessively tired lately. I started to feel my throat constricting, and tears sprang to my eyes. I had to pull over because I literally couldn't breathe. I had to force myself to calm down, breathe slowly, and realize that I was just having a normal attack of being petrified that he would relapse.
With diagnosis came the awareness that life can be cruel and unpredictable. Because many parents and children feel that treatment is keeping the cancer away, the end of treatment sometimes leaves families feeling exposed and vulnerable. When treatment ends, survivors and their parents must find ways to live with uncertainty, to find a balance between hope and reasonable worry.
People forget sometimes that the toughest part of being off treatment is being off treatment! You aren't doing anything active to nail any microscopic tumor — no drugs, no zaps, no cutting, just sitting. And that can be terrifying.
* * *
I was told nothing about late effects when I was treated for Hodgkin's as a teen. The good part of that was that I had no excess anxiety. I see people come out of treatment now and they go from mentally fighting the disease to being very fearful and anxious. That's a very difficult thing. But then my ignorance caused a lot of other suffering when I tried to get good care for my late effects. Finding a balance is a very complex thing, and the way the doctor handles it from the beginning sets the tone.
Meeting with doctors and nurses
Doctors and nurses can help with the transition to survivorship by having a meeting with the family before the end of treatment. You may have to suggest the meeting to your child's medical team, although at many centers these meetings are routine. Many families make a separate appointment for this discussion so that it will not be on the actual last day of treatment. The appointment should be long enough to allow a lengthy conversation. Topics discussed during this meeting might include:
 The disease, the treatment, and possible late effects.
 When and who to call with specific questions and concerns, including a written list of symptoms that should prompt a call.
 A detailed discussion of the next steps: which healthcare providers will see your child, the appointment schedule, the follow-up schedule, when the central line will be removed, and what (if any) immunizations to get.
Excerpted from Childhood Cancer Survivors by Nancy Keene, Wendy Hobbie, Kathy Ruccione. Copyright © 2012 Childhood Cancer Guides. Excerpted by permission of Childhood Cancer Guides.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.