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Finding Cancer Resources for Your Child With CP
Unfortunately, chronic diseases that usually begin in adulthood (such as certain cancers) may occur far earlier for people with CP.
Children with cerebral palsy are 5 times more likely to develop cancer early in life than children without CP, according to a study published in the October 2022 edition of Preventive Medicine Reports.
For parents of children with cerebral palsy, a cancer diagnosis can feel like a blow too heavy to bear. However, with the proper care and support, you can help ensure your child maintains their quality of life while getting the treatment they need.
One of the best ways to prepare yourself to care for a loved one with cerebral palsy and cancer is to learn as much as possible about these co-occurring conditions.
It is important to understand that there are no miracle treatments for cancer. Unfortunately, scammers (and even legitimate businesses) prey on vulnerable cancer patients and their loved ones.
The Federal Trade Commission (FTC) offers helpful information on how to avoid common health scams.
Your best approach to educating yourself on cancer is to seek practical information from reputable sources.
Examples of trusted cancer resources include:
- American Cancer Society (ACS)
- American Institute for Cancer Research (AICR)
- American Society of Clinical Oncology (ASCO)
- Cancer Research Institute (CRI)
- National Cancer Institute (NCI)
- National Library of Medicine
The NCI’s page on How to Find Cancer Resources You Can Trust can help you weed out inaccurate information.
Best Children’s Hospitals for Cancer
There are several pediatric cancer centers across the country that treat children and teens with cancer. These hospitals generally treat children up to age 18 or 19, but there are some children’s hospitals that will continue to see patients until they are 21.
These are the top 10 hospitals for pediatric cancer in 2023 according to U.S. News & World Report:
- Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
- St. Jude Children’s Research Hospital
- Cincinnati Children’s Hospital Medical Center
- Texas Children’s Hospital
- Children’s Hospital of Philadelphia
- Children’s National Hospital
- Children’s Healthcare of Atlanta
- Children’s Hospital Colorado
- Johns Hopkins Children’s Center
- Ann and Robert H. Lurie Children’s Hospital of Chicago
Many of these hospitals offer clinical trials run by the Children’s Oncology Group (COG), which is supported by the NCI.
Tips for Finding a Cancer Treatment Center
Before deciding on a cancer treatment center, you should ensure it checks all the boxes for your child’s needs.
Here are some tips for choosing a cancer treatment center:
- Ask your child’s pediatrician for a recommendation.
- Decide if you would be okay traveling far from home for your child’s care.
- Locate a cancer center that offers clinical trials where your child can access cutting-edge treatments at little or no cost to you.
- Request a list of approved cancer treatment centers from your health insurance carrier to make sure your child’s care is covered.
- Search for oncologists who specialize in treating cancer in individuals with CP.
Perhaps most importantly, you should feel confident that the cancer team you choose is qualified to address the unique care needs of children with cerebral palsy.
The National Library of Medicine’s Medline Plus provides this comprehensive list of questions to ask your child’s doctor about cancer treatment.
You can find information on specialized cerebral palsy care on our Cerebral Palsy Treatment Centers and Support Organizations page.
Emotional Support Resources
Facing a child’s cancer diagnosis can significantly affect your family. While you may feel pressure to always put on a brave face, there will be times when your family needs more support than you can provide.
Thankfully, there are many different emotional support services for families affected by cancer as well as cerebral palsy. These may be provided by social workers, psychologists, spiritual advisors, and support groups.
The support you receive should be personalized to your family’s needs and what makes you most comfortable. There is no one-size-fits-all approach since all families are different.
Visit the Livestrong Foundation’s Family Corner to access a wide range of emotional support resources.
Your cancer care team or family doctor can also help connect you with nearby support groups and mental health services.
Talking to Your Child With CP About Their Cancer Diagnosis
One of the best ways to help your child face their cancer diagnosis is to talk with them about what they are feeling.
Here are some resources to help you get started:
- Children with Cancer: A Guide for Parents (NCI)
- Helping Your Child Adjust to a Cancer Diagnosis (ACS)
- How to Talk to Your Child about Cancer (St. Jude Children’s Research Hospital)
You know your child best, so understanding what emotions they are experiencing can be the most helpful place to start in supporting them.
Download and print this children’s coloring book to use as a conversation starter.
Understanding the Link Between Cerebral Palsy and Cancer
Studies have shown that cerebral palsy and other developmental disabilities are often linked to lower screening rates and greater incidences of specific types of cancer.
Each year, roughly 400,000 children worldwide are diagnosed with cancer.
A study of cancer mortality in people with cerebral palsy in California over a 14-year period found that cancer of the esophagus, colon, liver, breast, and bladder made up a large number of deaths.
Specifically, the study team proposed that motor impairments associated with CP may contribute to an increased risk of cancer. Physical activity has been shown to help slow the development of some neoplasms (abnormal tissue growth), especially in hormone-related and digestive cancers like breast and colon cancers.
These and other study results have also shed light on potential areas for improvement in cancer screening and treatment for individuals with developmental disabilities.
Cerebral Palsy and Cancer Screening
Even though early cancer detection offers the best chance for treatment and survival, it can be difficult for individuals with disabilities to get screened for cancer.
Data shows that people with CP and other disabilities are much less likely to get mammograms, pap smears, colonoscopies, and other important screenings to detect cancer before it spreads.
For example, a CDC study found that 57% of adults aged 50-75 without disabilities got screened for colorectal cancer in 2013, compared to 49% of adults of the same age with disabilities.
Common barriers to cancer screenings for individuals with disabilities include:
- Access to medical care
- Cognitive difficulties
- Communication issues
- Lack of height-adjustable examination tables
- Medical personnel not being trained on proper patient lifting, transferring, and positioning techniques
- Negative staff attitudes
- No transportation
- Physical limitations
- Trouble scheduling an appointment
Because of these obstacles, any cancer present in the body may not be found until later when it is harder to treat.
“Patients with disabilities tend to present with later stage disease, have reduced treatment options, and a higher cancer mortality than their non-disabled counterparts.”
To help combat lower screening rates, health care professionals must receive proper training on testing individuals with disabilities for cancer.
Additionally, parents of children with cerebral palsy must ensure their child’s life plan includes proper cancer prevention and screening into adulthood.
The American Society of Clinical Oncology (ASCO) offers a downloadable cancer survivorship care plan.
Tips for Reducing Cancer Risk
Unfortunately, there isn’t a single way to prevent all cancers from forming. However, families affected by CP can take specific actions to help lower their loved one’s risk of developing common types of cancer.
Some of these preventative measures include:
- Avoiding tobacco. Tobacco has been linked to esophageal, lung, mouth, throat, and other cancers. Even unintentional exposure to secondhand smoke can increase the risk of lung cancer.
- Being screened for cancer. Regular cancer screenings increase the chance of discovering the disease early, which is when treatment is more likely to be successful. You can find a list of recommended cancer screenings on the CDC’s official website.
- Eating a well-balanced diet. Although people with CP sometimes have difficulty swallowing, proper nutrition might help reduce cancer risk. Limiting processed meats, for example, can decrease the incidence of certain cancers, according to the World Health Organization (WHO).
- Engaging in physical activity. Regular exercise can help lower the risk of hormone-related and digestive cancers, such as breast and colon cancer. Depending on mobility, activities like arm cycling, chair aerobics, and yoga can be fun ways to help your loved one stay active.
- Getting enough sleep. According to Johns Hopkins Medicine, long-term sleep disruptions can increase the odds of breast, colon, ovarian, and prostate cancers. Thankfully, specific treatments exist for people with sleeping problems associated with CP.
- Seeking regular medical care. Like anyone else, people with CP should have yearly physical exams. Depending on family history, your child’s doctor may recommend further screening, including genetic tests like BRCA, which can be used to check for genetic mutations linked to breast and ovarian cancers.
Managing Life With Cerebral Palsy and Cancer
In addition to being vulnerable to certain types of cancer, people with cerebral palsy may have other health complications that can affect their quality of life for years to come.
The Birth Injury Justice Center can connect you with financial, medical, emotional, and other support resources to help your family manage life with cerebral palsy.
Contact us today at (800) 914-1562 to get started.
