Childhood Cancer

Print

Childhood Cancer Survivors

Complicated Emotions After Treatment Ends

During treatment, patients are engaged in an arduous battle against their cancer. They direct all of their time, energy, and strength toward dealing with immediate survival. But when the treatments stop, the drugs aren’t necessary, and the scars heal, many survivors come to realize there is also an emotional price to pay and that being free of cancer does not mean their emotions are cancer-free.

Some survivors and their parents are able to set their feelings aside during treatment, but are left to come to grips with the experience and what it means in life when treatment ends. That process can be very difficult. Family, friends, and doctors may brush off concerns, saying it’s time to “get on with your life.” Ignoring the feelings is unlikely to cause them to disappear. Unresolved emotions usually don’t just vanish—they may even grow stronger and surface unexpectedly.

After people experience a traumatic event, they may have symptoms of anxiety that persist over time. Just like soldiers returning from combat, survivors of childhood cancer and family members may experience symptoms of post-traumatic stress.

Post traumatic stress syndrome (PTS)

Some of the most common symptoms are:

  • Avoiding people, places, and thoughts that remind you of treatment

  • Being hypervigilant (feeling constantly “on alert”)

  • Difficulty falling or staying asleep

Other symptoms include irritability or angry outbursts, difficulty concentrating, or having an exaggerated startle response. Some people tend to have intrusive recollections or dreams of the event, or feelings that the trauma is recurring (flashbacks). Survivors and their family members may have only some of these symptoms or they may have enough symptoms to meet criteria for a diagnosis of post-traumatic stress disorder (PTSD). Rates of PTSD among survivors and their parents are generally low, but many survivors and their parents have some symptoms of post-traumatic stress (Cook JL, 2021 and Tremolada M, 2016). The good news is that treatments are available to help people recover from PTSD or manage post-traumatic stress symptoms.

I was diagnosed with PTSD several years ago. I have a terrible startle response and lots of recurring memories. I always hated when my kids would ride in cars with other people, and I have lots of anxiety now that they drive. However, I made a decision that I would not keep them from doing these things because of my fears. That would be so unfair. I think it may always be with me, but it does not keep me from living my life, nor would I consider it debilitating. You have to keep putting one foot in front of the other for your children. As a parent, you don’t have the luxury of indulging your pain all the time, nor would it be good for you.

I have far more anxiety than I think I ever would have had. Mainly I worry about the death of one of my children. I have never been able to find any therapist that has a background to deal with this, although I know they exist. Family and friends are supportive, but this experience is so unique that it is often hard to share. I have not engaged in support groups, etc., because it is also hard to relive that trauma and it is just not something I would be comfortable doing in a group setting.

 

It has impacted where I choose to work, what I watch for in my own child, and how I react to certain situations. It’s definitely life-changing. PTSD is real and extremely hard. I have the weirdest triggers. Getting in the car before 8 am, feeling sick if I eat when I first wake up (I was NPO [nothing-by-mouth] a lot so I think it stems from this), the smell of the hospital and the sound of IV pumps and hand sanitizer are all things that trigger me. The smell of the soap my mom used to use in the hospital makes me physically want to be sick. Just the thought of having to be admitted in the hospital sends me into a panic. I don’t like the thought of being trapped there. I sobbed the last day we were in the hospital with my son after we had him. I wanted out and I wanted out right then. The poor nurse came to do an echocardiogram on me, and I think I scared her. I was so over that place.

 

PTSD has played a big role in my life since diagnosis. Cancer is a scary thing. During treatment, there are very many unknowns and a lot of things that can go wrong. Unfortunately, I experienced many times when I thought it would be the end for me. After I finished treatment, I noticed myself having extreme flashbacks to those times, along with other symptoms. PTSD has impacted many parts of my life and is something I actively try to work on and cope with.

 

I have not officially been diagnosed with PTSD, but I do have many of the symptoms. I have long-term anxiety (often in the form of repetitive, intrusive thoughts), anger/a quick temper, ADHD/concentration issues, etc. These symptoms are treated alongside my anxiety and depression, though my doctors are aware of my history and could be taking the possibility of PTSD into account when treating me.

Survivor GuiltNetworking For Support

Table of Contents

All Guides