Guest Post: Survivors Express Mental Health and Financial Concerns
Cierra 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.
“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.”
Hey everyone, I’m Cierra Morgan, and I’ll be guest blogging for Children's Cancer Cause this fall! I’m super excited to be here.
For my first post, I’m digging into the results of a survey of childhood cancer survivors conducted by Children’s Cancer Cause over the summer. Children’s Cancer Cause will be sharing full results from this survey throughout September - Childhood Cancer Awareness Month - but as I start to go through the responses, a few of the things that really stand out to me are repeated concerns about the insufficiency of awareness around the mental health of survivors, a lack of insurance coverage for survivorship care, and the peace of mind that comes from regular survivorship care (and, conversely, the stress that comes from a lack of regular survivorship care).
Mental Health: "Emotional healing can take as long or longer than physical healing."
When dealing with childhood cancer, the main focus for physicians is to help kids beat childhood cancer. What's overlooked in this process, however, is the mental aspect: not only healing the children physically but also mentally. I've had first-hand experience with this as a childhood cancer survivor. My mind tends to wander to unforeseen places of treatment flashbacks while simultaneously worrying about what could happen in my adult life with cancer — and also throwing a bit of survivor guilt into the mix.
So many of the survivors we surveyed feel the same emotional distress as I do. A survivor of leukemia, diagnosed as a teenager, told us: "My survivorship journey has been a roller coaster of emotions with ups and downs that I never expected. I worry about the potential for new cancers to develop, such as leukemia or breast cancer, due to the radiation and chemotherapy I received.”
When asked what survivors would like to see more support around, mental health was a common response.
These insights underscore the critical need for improved mental health support within childhood cancer care. Survivors have expressed a strong desire for Children's Cancer Cause and the rest of the community to prioritize mental health in policies and programs, as many feel this aspect of their recovery is often overlooked.
"Emotional healing can take as long or longer than physical healing," said a survivor who was diagnosed at age ten.
I couldn't have said it better. This annual survey has reinforced that mental health has to be a priority in the treatment and care of childhood cancer survivors to ensure that kids can take on adulthood with the right tools to conquer mental health challenges.
→ Learn more about mental health signs to watch out for and how to seek help at this Children’s Cancer Cause Stewart Initiative resource page.
Insurance and Financial Toxicity: "I just wish health insurance wasn't so expensive.”
Everything today has a painful price tag, and, unfortunately that also includes childhood cancer treatment and survivorship. When you combine hospital visits with transportation costs and things like highly specialized care or perhaps disability aids, the costs can add up quickly, especially since insurance is nowhere near as helpful as it should be when covering the costs of essential cancer care.
"I finished treatment a few months ago, but getting follow-up care has been a total nightmare. My insurance wouldn't cover some of my meds, and I had to wait weeks for appointments,” said a teenage survivor.
Some surveyed survivors spoke out about how they had difficulty with insurance coverage for late effects like infertility and neurological issues. Financial toxicity is a major problem, as patients often struggle to find facilities that will take their insurance or even insurance that will cover the care they need. Approximately one-third of surveyed survivors said they had to delay or forgo cancer survivorship care due to costs.
This financial strain not only affects access to care but also places a heavy burden on families. For many survivors, the cost of health insurance itself adds to the overwhelming challenge of managing their recovery. "I just wish health insurance wasn't so expensive. My parents pay for it now, but it is very expensive," said a young adult survivor of leukemia who was diagnosed at eight years old.
Multiple survey respondents expressed their frustration with insurance companies' lack of assistance regarding cancer care and are frustrated with how difficult it is to navigate the complexities of insurance systems on their own. The overall financial strain underscores the urgent need for better support systems and more accessible insurance options for cancer patients and survivors.
→ The Children’s Cancer Cause Stewart Initiative site for survivors has in-depth information on health insurance options, legal rights related to insurance, and navigating financial hardships.
Survivorship Care: “I was nervous about survivorship care, but it's been a total game changer.”
What happens after treatment is over? Are childhood cancer patients supposed to resume their everyday lives? You might think so, given that nearly half of those surveyed said they did not receive a Survivorship Care Plan or have lost track of it or are not sure. But a Survivorship Care Plan is so critical because it enables childhood cancer survivors to access recommended health screenings, monitor recommended psychosocial support, and even gain advice regarding healthy behaviors.
The absence of a Survivorship Care Plan can leave childhood cancer patients feeling uncertain about their future.
What survivorship looks like for me isn’t the same as what it looks like for someone else. But here’s what a few survivors had to say that resonated with me:
“I am thankful for the annual visits and testing. That is how we found out about my heart condition. Otherwise, I may not have known until the damage caused symptoms or worse,” said a young adult lymphoma survivor diagnosed at age five.
A childhood osteosarcoma survivor now in her early thirties said: “I’ve developed a relationship with my nurse navigator. She watched me grow up from 10 years old until now into the month of my 33rd birthday.”
“I was nervous about survivorship care, but it's been a total game changer,” said a teenage leukemia survivor. “My care team helps me manage my fatigue and anxiety, and I've even started volunteering with other survivors. It's amazing to connect with people who get what I've been through. Don't be afraid to reach out and join a survivorship program! It's like having a superhero cape to help you navigate life after cancer.”
These survivors demonstrate how positive relationships with healthcare providers, regular monitoring, and continuity of care can make challenging treatments more bearable, detect life-threatening conditions early, and provide a sense of connection and reassurance that extends well beyond the initial cancer treatment.
→ Take the free Stewart Initiative course “Your Survivorship Journey” to learn more about Survivorship Care Plans, follow-up care guidelines, and transitioning your care from pediatric oncology to survivorship and adult primary care.