Build Your Care Team
Search
Emmalisse Walton
When childhood cancer survivor Emmalisse Walton has health-related questions or problems, she knows help is just a phone call away. Walton was diagnosed with a brain tumor called PNET when she was a freshman in high school.
Now 30, she calls Julia Stepenske, RN, CPON, nurse coordinator of the Pediatric Oncology Survivors in Transition (POST) program at Advocate Children’s Hospital in Illinois. POST provides follow-up care, education, referrals, and counseling for childhood cancer survivors. Stepenske is a childhood cancer survivor, so she has firsthand knowledge of survivors’ needs.
“Sometimes I call Julia when I'm upset or if nothing's working or I'm having issues,” Walton says. “I call Julia and say, “Hey, I’m freaking out. What's going on? And she says, ‘OK, take a few breaths for me. Let me get some resources.’ Then I take those resources and do what I need to do with them.”
Childhood cancer survivors like Walton often need ongoing medical care from different specialists long after cancer treatment has finished. Survivors may have late effects, which are side effects of treatment that happen months or years after cancer treatment is over. These effects include heart and lung problems, second cancers, mental health care needs, and learning challenges. Survivors may need cancer screenings at a younger age than people who did not have childhood cancer.
Survivors may need help putting together a team of health care providers. That can be challenging because many providers are not aware of the unique needs of adult survivors of childhood cancer because it is so rare. Some providers are hesitant to take on childhood cancer survivors as patients because they may have complex care needs.
Walton’s treatment included radiation to her brain and chemotherapy. Radiation caused short-term memory loss, hearing problems, and basal cell carcinoma (skin cancer). She has numbness and weakness (peripheral neuropathy) in her feet from chemotherapy. She also has psoriatic arthritis, which can cause joint pain, swelling, and stiffness, but she is not sure if that is from cancer treatment or not.
“Once I was finished with chemo, I was declared cancer-free,” Walton says. “I still have side effects, but they’re not going to keep me from living my life.”
Julia Stepenske, RN, CPON
Reach out to your cancer center
To find the health care services you need, start by talking to the survivorship care team at your pediatric cancer care center—even if it has been a long time since you were treated there, Stepenske says. If you are unsure who to contact, call the center and ask for the childhood cancer survivorship care team. If your treatment center does not have one, ask for the childhood cancer care team. It is important that you talk with a provider familiar with childhood cancer.
Ask for copies of your medical records and a survivorship care plan. If they do not have a survivorship care plan, ask for a treatment summary. You can use this summary to create a plan through Passport for Care with the Children’s Oncology Group.
“It’s important that the care providers who know them best still be a part of their care team,” Stepenske says. “Survivorship is not the first and foremost issue at other places. I think survivors are best served if they can stay in touch with us. If they need our help, we are here to help them. When someone has several challenges, we work with them to prioritize their needs.”
Build a team of care providers and support
Your survivorship care team can also help you find providers. Stepenske advises survivors to find a primary care or internal medicine provider. If you have insurance, check your plan’s list of providers to see who is covered by your insurance. Look up their bios on their clinic’s website or read their LinkedIn profile to find out more about them. Look for someone who appears to be a good fit.
Once you find a provider, make sure they listen to you and that they pay attention to your needs as a childhood cancer survivor. Take a copy of your survivorship care plan to each visit. If the provider does not take your concerns seriously, find another one. Reach out to your survivorship care team to help.
Walton’s primary care provider worked with her to find a treatment that would work for her psoriatic arthritis. It is tricky because the treatment can lower blood counts. This can make the person more vulnerable to infections. Walton’s provider monitors her blood counts to ensure they do not get too low.
For mental health, Walton has found online and in-person counseling helpful. “It's helpful to talk to somebody who's a third party. They are professional,” Walton says.
Make needed adjustments at school and work
Walton’s short-term memory loss created challenges at school and now at work, but she has not let those things stop her. She earned an associate’s degree in arts from a local community college, an accomplishment that took her 11 years. She worked with the school’s disability office to have adjustments made to her school plan to account for her memory loss and other needs.
A math professor noticed Walton was not doing well on the chapter math tests. Because of her short-term memory loss, Walton had a hard time remembering new information. So, the professor began testing her on each section of the chapter. This method helped her retain new information over time.
While she was in college, Walton worked as a school bus driver and went to school part-time. She now works in administration at the local jail. She worked with her employer to make accommodations in her workplace. When Walton began her job, she was honest with her employer about her challenges. The staff worked with her to make adjustments to her workload.
“I was upfront with my employer about my disability and explained how I overcome my disability to get the job done,” Walton says. “If you leave important details out, your employer won’t know how to help you or be confused to as why you weren’t able to complete certain tasks. It’s always important to be honest with your doctors, employers, and school officials and advocate for yourself because it will help you in the long run.”
Keep in mind that you are not obligated to disclose your cancer history. But if you need accommodations to help you do your job, your employer will need certain information. The Americans with Disability Act prohibits employers from discriminating against people with disabilities. Late effects of cancer treatment may qualify as a disability. If employed, you have the right to get accommodations.
Do not be afraid to speak up for yourself, Walton says. She learned to advocate for her needs while being treated for cancer. Stepenske and other survivorship care team members helped her. Stepenske is proud of how far Walton has come.
“At first Emma was completely dependent on her caregiver to take care of her,” Stepenske says. “Now she has come into her own. She goes to visits by herself. She asks questions.”
Like Walton, every childhood cancer survivor deserves excellent care. If you need help, reaching out to the center where you got cancer treatment can be a good first step to getting the resources you need.