2024 Survivorship Survey Results

Fear of Relapse

Asked as an open-ended question with just one answer possible, 36 percent of the survivors we surveyed responded with relapse/recurrence or second cancers as their top health concern.

This fear is not unfounded. Of the survivors we surveyed, 27% have had a relapse or recurrence of their primary cancer and 13% have been diagnosed with a second cancer.

"I am well aware of the possibility of late term cancer effects. I follow my intuition about my body more than most. I get very anxious if I discover something new, like a mole, bruise, or leg pain. There is always this constant fear that instantly goes to the scary place of relapse." - Leukemia survivor, diagnosed at 3

Physical Late Effects

22% of survivors responded to this open-ended question by listing a particular physical late effect (or multiple late effects) that are of top concern to them. Several survivors shared more detail about these late effects and their impact on daily life:

• “I suffer from epilepsy, aura migraines and permanent vision damage. These things affect me both physically and mentally everyday.” - Brain tumor survivor, diagnosed at 10

• “Due to my cancer being in my leg, I had a limb salvage surgery at the age of 10. The majority of the bone in my left leg was replaced by a metal rod. With this, I have spent the last 9 years in and out of physical therapy relearning how to walk and gaining strength. Everyday is different, I wake up not knowing if I will walk pain free or not at all.” -Osteosarcoma survivor, diagnosed at 10

• “I was 16 when I had my hip replacement, 19 when I got my shoulder replacement, and I have to take migraine medicine everyday. I am limited to everything I do either because my joint replacements or my headaches/migraines.” - Leukemia survivor, diagnosed at 13

• “The most annoying effects of my tumor and treatment that I deal with on a day-to-day basis are extreme dry eye/irritation because my left eye doesn't close, my peripheral vision is affected by abducen's nerve palsy, I have progressive sensorineural hearing loss which is now severe to profound in both ears, constant fatigue, and dull headaches.” - Brain tumor survivor, diagnosed at 5

Mental Health Concerns

More than one in four survivors shared a mental health issue as their #1 top health concern. Survivors specifically mentioned depression, anxiety, and PTSD.

“I think one of the challenges that is hard to mention is the PTSD as you grow older. For me, some things really put my mind back in that hospital room, scared and worried about death. And grief takes its toll, especially if you make friends that pass on while you survive. It’s really rough.” - Leukemia survivor, diagnosed at 5

Several of these same survivors shared that they have been told by a health provider that their biggest health vulnerability is a serious physical late effect such as cardiotoxicity or a high risk of relapse. Despite this knowledge, these survivors still listed mental health as their top issue of concern, signaling that this is a significant issue impacting daily quality of life.

"Emotional healing can take as long or longer than physical healing," said a survivor who was diagnosed at age ten.

In another survey question, we asked what advice you’d give to others who are entering young adulthood as a childhood cancer survivor. Multiple survivors replied with variations of prioritizing mental health.

“Get a therapiest ASAP. Even if you think you don’t need it. You do,” said a leukemia survivor who was diagnosed at age eight.

Other Concerns: Education, Employment, Becoming a Burden

Taking precedence over any physical or mental late effects, some survivors expressed concerns about how to become a successful, independent adult.

A survivor diagnosed with a brain tumor at 18 and now struggling with college coursework shared:

“Memory loss often leaves me feeling frustrated and behind in my academic goals. In addition to the cognitive challenges, my energy levels have been consistently low. It's hard to muster the motivation and stamina needed for schoolwork, and some days, even attending classes feels overwhelming.”

Several expressed concerns about becoming a burden, either to society or to their loved ones. “Needing others to help me,” one survivor wrote as their top concern.

Documentation Matters: Survivorship Care Plans

When cancer survivors transition from active treatment to general care, it is recommended that they receive a record of treatment (summary of care) and a Survivorship Care Plan to share with future health providers throughout the survivor’s lifetime.

This remains a problematic gap in transition services, with far too many childhood cancer survivors reporting that they don’t have or have lost track of this documentation.

Nearly half of those surveyed in 2024 said they did not receive a Survivorship Care Plan or have lost track of it or are not sure.

“I received no transition from my pediatric oncology team. I just eventually grew too old to be seen by my pediatric oncologist. When she retired, I was given a very brief four-page report regarding the treatments I'd received when I was younger and sent on my way.” - Brain tumor survivor, treated at age 5

We continue to hear that older generations of survivors have the biggest challenges with their records. “I don’t know how or where to access survivorship care. I was never connected to such care because it didn’t exist when I was being released by my oncologist. I was told ‘good luck, we don’t know what to expect,’” said a survivor who was treated for childhood leukemia several decades ago.

This feedback from survivors gives us valuable information about ongoing gaps in transitioning care and long-term primary care.

Specialized Care at Survivorship Clinics

Half of the survivors we surveyed are receiving survivorship care from a long-term follow-up clinic, while another 23 percent are receiving follow-up care but not from a survivorship clinic.

“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.” - Lymphoma survivor diagnosed at 5

One survivor called survivorship care “a total game changer,” describing how her care team helps her manage fatigue and anxiety in a way that’s unique to her experience as a survivor of adolescent leukemia:

“A survivorship program is like having a superhero cape to help you navigate life after cancer.”

For those survivors who are not receiving survivorship care, over half told us they are not sure where the nearest survivorship center or long-term follow-up clinic is from where they live.

“I would love to access survivorship care but know nothing about it and don’t know where I’d find it,” said a lymphoma survivor diagnosed at 18. “When I aged out of my oncologist they told me to just follow up with my primary care provider.”

“I’ve moved out of the area I formerly received care, and feel overwhelmed with not knowing where to look,” another survivor told us.

Survivor Awareness of Health Risks

We asked survivors: Individual to you and your treatment history, what’s your greatest health risk as a survivor – your biggest health vulnerability that you need to be on the watch for?

30 percent of the survivors we surveyed told us that they either don’t know their greatest health vulnerability (14%) or they’ve self-deduced their biggest health risk from internet research (16%).

Ideally, a survivor is having face-to-face conversations regularly with healthcare professionals who are well-versed on the survivor’s history and familiar with the COG Long-Term Follow-Up Guidelines. Remember that guidelines change as research progresses and as your individual health and lifestyle behaviors change, so regular visits with a focus on your survivorship are the best way to stay educated and empowered about your health risks and how to mitigate or manage late effects.

Gaps in Primary Care Knowledge

Approximately one-third of survivors surveyed in both 2023 and 2024 report that in the last year, their non-oncology doctors "rarely or never" seemed up-to-date about the care their patient has received from cancer specialists.

“I don’t believe my primary care doctor takes that I am a survivor into consideration,” said one survivor. “I was diagnosed, treated, and released before follow-up care was a thing.”

The reality is that you might be the only childhood cancer survivor that your adult primary care provider is seeing in their clinic - or at least the only one who survived your particular type of cancer. That's why it's so important to have a survivorship care plan - and refer back to it often.

Your plan should include the contact info for someone at your survivorship clinic or treatment center that non-oncology providers can reach out to when they have questions or require clarification.

Parental Involvement in Care Decisions

One out of every two survivors between the ages of 18-25 categorized their parents’ involvement with their survivorship journey and healthcare decision-making as a shared ‘team’ role.

For many young adults - 23% of those we surveyed - their parents are still heavily involved in their healthcare, with the survivor categorizing their role as “my parent(s) still manage most or all of my healthcare logistics and survivorship concerns.”

On our dedicated survivorship resource site, we provide information about the logistics of turning 18 and what it means for a patient’s rights. Here’s the gist: After you turn 18, your doctor talks to you, not your parents, about your health. If you want to share medical information with others, your doctor will ask you to fill out a form that allows them to see your medical record and be with you during your visit.

Cost of Insurance and Care

One in three young adult survivors surveyed in 2024 said they have had to delay or forgo cancer survivorship care due to costs.

"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.

The overall financial strain underscores the urgent need for better support systems and more accessible insurance options for cancer patients and survivors. 

“I am at risk for infertility and have limited financial resources to seek IVF and at risk of going into medical debt for my numerous appointments I have to deal with my heart, hearing, and follow up. I have been a survivor for over 23 years and still struggle with the aftermath of this illness that plagued me at the age of 8,” a survivor of osteosarcoma told us.