Guest Post: Living with Cancer and the PTSD of Survivorship
Cierra Morgan is a University of Southern California senior studying journalism and health and human sciences. She’s guest blogging for Children’s Cancer Cause in the fall of 2024 as part of a course internship. Read her first post here.
“I plan to pursue journalism and a law career. But for now, I love what the average 21-year-old girl loves: shopping, traveling, and having a good time with my friends. I also had childhood cancer myself, which is why working with Children’s Cancer Cause is even more special to me.”
This week I wanted to get a little more personal with you guys by sharing my own childhood cancer story. I want to use my experience to raise awareness and provide others struggling with childhood cancer or survivorship mental health resources to make the journey a little smoother.
I was diagnosed with carcinoid syndrome at the age of 14. In my special case, I had no symptoms of ever having cancer. It took my family and I by surprise when one day I got an x-ray for a harsh cough, and it came back that my lung had collapsed due to a tumor that had grown to the size of a child's entire lung.
Now as an adult, thinking about the nitty gritty details of my time spent at the hospital tends to bring tears to my eyes and make my heart beat so fast I feel like my whole world is collapsing on me. But as a kid, I didn’t really mind it that much. I knew what I had to do to get better - or what the doctors were telling me I had to do to get better - and I did it. Looking back, I didn’t complain or fight it at all. I also had - and still have - an outstanding support system from my family. They are always there for me when I need them, and they make the process as easy as it can be.
In a matter of months, I went through two major surgeries, a few minor bronchoscopies, and countless scans and IV pokes.
I was cancer free! But only for a little while. Then, well, I guess carcinoid syndrome liked me so much it decided to give me a go at round two. Now I’m here… still fighting cancer.
I’m a survivor of childhood cancer yet it followed me into my adulthood. When I say I have cancer, people tend to be shocked because I don’t look like what people outside of hospital life think a cancer patient looks like. My cancer has been stable for over ten years now, and I’ve been living a semi-normal life as an outpatient doing every day college girl things while getting treatments along the way.
As an adult who’s had cancer before, I know that it’s just going to suck sometimes. I’m going to want to scream, cry, and kick my legs at the thought of more treatments and injections and scans. But the thing is… now I have more PTSD than I did when I had childhood cancer.
My case is a bit unique because I’ve been living with stable cancer for such a long time. But what I’ve realized is that having childhood cancer really does mess with your head. I’m constantly dreading scan results and checking up with my oncologist because I’m petrified that one day she’s going to tell me things aren’t going so well anymore. That one day she’s going to sit me down and tell me that I can’t keep living my everyday life and that I’ll end up back where I was when I was diagnosed in a hospital bed feeling powerless.
I feel like even into my adulthood I haven’t fully unpacked what has happened to me. That goes for a lot of childhood cancer patients. Doctors are so focused on making you physically better they can fail to pay attention to how to make you mentally better.
Neuroscientist Hilary Marusak wrote about her mental health research studies on childhood cancer for the Scientific American. In her article Understanding the Psychological Effects of Childhood Cancer she wrote: “Among children with cancer, research suggests that specific post-traumatic stress symptoms occur more frequently than the full spectrum of post-traumatic stress disorder (PTSD) and may affect nearly 75% of youth during or after treatment.”
Research on the hippocampus, amygdala, and prefrontal cortex - parts of our brains used for learning, memory, emotion-related functioning, attention span, and higher-order executive functions - has found that these areas of the brain are altered in individuals exposed to childhood trauma such as cancer. Post-traumatic stress symptoms can then take over a childhood cancer patient’s mind, manifesting as “nightmares or flashbacks, a desire to avoid people, places, or things associated with the experience, a difficulty in feeling emotions, feeling helpless, distant, or cut off from others, and feeling anxious or easily startled,” Marsuak wrote.
The American Psychological Association (APA) touched on how mitigating PTSD can start with early psychological intervention with childhood cancer patients. “Having high levels of support from the family, classmates, the school, and the hospital predicts better adjustment,” said Hoekstra-Weebers, a researcher at the University Medical Center Groningen. Researchers believe that cognitive-behavioral interventions for not only childhood cancer patients but the entire family will help the child grow and process the journey in a healthier mental way. This includes teaching effective coping strategies for children, targeting social skills development, and group therapies for siblings and parents with their children.
All of these strategies can help improve mental health for childhood cancer patients down the road into adulthood.
An organization that I want to highlight who has helped me with my mental health throughout my cancer journey is The National Children’s Cancer Society (NCCS). NCCS offers a family support program with a case manager who provides emotional and practical support to parents and children. Through their scholarship program, I connect with other childhood cancer survivors online, and I have the opportunity to mentor children who are currently going through treatment. It has been a great outlet for me to get to talk to other people who understand what I went through, and it’s so rewarding to help support children through their journey as a mentor and extra support system.