Fears of Recurrence
Survivors and their parents experience the whole spectrum of feelings about possible relapse. Some people say they never think about it. They acknowledge it could happen, but they say, "I'll deal with it then." It appears that it is no longer a part of their daily, weekly, or monthly reality. Many feel anxious when an anniversary date approaches or it is time for a medical checkup. And some, even many years after treatment, still have nightmares or anxiety attacks that may interfere with daily life.
Matthew has his first post-treatment scans in 12 hours. I'm freaked out and can't sleep. Every time I think about it, I feel the bile rising. I have been watching his every little move and complaint, and each time I'm convinced that it must be a relapse. If he walks in saying, "Mommy, my toe hurts!" I think, "Oh, no, relapse!" But then I have to stop myself, calm down, and recognize that it's only a stubbed toe. Then I count how many bruises he has—how many are just from playing outside and how many are from low platelets? I even checked his temperature yesterday because I was convinced that he had a fever—it was 98.2. He was cold. I think I'm going nuts!
This is really hard, being off treatment. I feel like I'm just waiting ...waiting ... waiting ... and holding down the vomit. Of course some members of my family say these great things like, "I'm sure it will be just fine," or "You just aren't accepting the fact that he is a normal, healthy kid now." How am I going to even make it through the day? How do I respond when the scans come back clear? Will I scream for joy? Cry? Laugh? Oh God, what if they aren't clear?
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It's been 4 years since my osteosarcoma was diagnosed and I don't even think about relapse. Relapse happens most often in the first year, so the farther out I get the less likely it is to occur. But, honestly, I never really worried about it.
You may be surprised to find that your feelings about recurrence vacillate over time. You may go through a period of fearfulness followed by a long time when you do not think about cancer. One mother said, "Funny how you think you've got the fear under control, then something happens and you again feel your head swimming, stomach churning, and your legs becoming spaghetti." It's perfectly normal to be at different places of this spectrum at different times.
I was just thinking that this state of vigilance and worry never seems to go away. I know parents of kids who are years out of treatment seem to do better with this, but it's not easy. Even when things are going well and you're sure it's just a cold, that worry is there. The thought in the back of your head says, "What if it isn't just a cold?" I look forward to the day when that thought in the back of my head is not my first thought when my son is sick. I know it will come.
In the last week, my teenage son, who is 3 months off treatment, has had a decreased appetite and been very tired. I know he's worried about the "what if " question, but hasn't voiced it. He's just extra quiet, so we've mentioned that he probably just has a cold or "bug" that's going around and needs more sleep (what teenager doesn't?). But we all know, that somewhere in all of our heads, there are bells ringing. I know, in my head, that this is just a cold. But my heart whispers, "What if?"
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My daughter is 12 years out from a diagnosis of average risk ALL. She is doing just great. But last week I noticed bruises on her legs and I flipped right back into that fear and panic. I thought, "Oh, my God, it's back."
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Seven years ago my daughter was diagnosed with leukemia. I had panic attacks while she was on treatment, and periodically during the first year off treatment when she was most at risk to have a recurrence. But those fears gradually just faded off my radar scope. I don't think about it at all—it's just no longer part of my life. I realize there is a tiny chance it could come back, but it just doesn't concern me. If it happens, we'll deal with it—just like we did the first time.
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My AML was cured 15 years ago with chemotherapy. There are good things and bad things that came out of it. I'm very careful when I drive because I know I can die. This is good. I also grew as a person, and also realize that cancer is not the only thing in life. I do not worry about getting it again.
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I'm 14 and had brain cancer when I was 8. I never worry about it coming back, but I'm reminded of it every day when I trip over something because of my visual problems. The brain tumor connects to the vision problem, but the vision problem is the only thing that bothers me today.
You may not normally be bothered by fears of relapse, until your annual follow-up appointment draws close. Sometimes, visiting the hospital for blood work, x-rays, and an examination causes dormant feelings to erupt. This is a very common phenomenon, and each survivor has individual ways to deal with these normal feelings.
I was incredibly embarrassed the first time I walked into the follow-up clinic with my daughter. I hadn't been in a children's hospital for over 3 years, and I thought I had worked though all of my strong feelings about her treatment. But the first bald kid I saw crying about an "owie" caused me to just break down in tears. I felt all the craziness that I felt back then just well up and spill out. I could barely talk and I was mortified. The only person who seemed comfortable with my feelings was the social worker who told me that I was experiencing a perfectly normal post-traumatic stress reaction. My daughter just pretty much shut down and wouldn't talk to anyone. Afterwards, she just said, "Mom, let's walk around outside for a while and we'll both feel better."
Some survivors and their parents find that they continue to have deep fears over an extended period of time. If you find that these concerns interfere on a regular basis with your daily life, get some mental health support. Individual or family counseling and support groups help to dispel isolation, share suggestions for dealing with survivorship issues, and can help channel strong feelings in constructive ways. Mental healthcare professionals can help you prevent problems from arising or deal with them if they do appear.
The concerns about relapses haunted me through most of my young adult life, and it was only with outside help that I was able to put to rest the more troubling aspects of these worries. Psychotherapy gave me better coping mechanisms and made me a better advocate for my own healthcare. I got to be a better observer of my symptoms with a better balance between realistic health concerns and what I call my more neurotic concerns. I also was able to overcome my hospital and needle phobia, both of which developed during my initial treatment. Mastering those two fears was a wonderful thing, especially since my career has often found me in hospital settings.
