As a survivor of childhood cancer, I know many would think that once treatment ends, the struggle is over and that the hardest part is finished. However, I know for me and many other survivors I have spoken with, treatment was the easier part of the cancer journey. You had a protocol (a treatment plan), support and resources that seemed to me to be available 24/7, and a team that you could rely on for information. When I entered survivorship as an adult, I immediately felt the difference; mostly, that resources and supports didn’t feel as close at hand, and I had to figure out a lot of things solo. I worried about a possible lifetime of late effects, never really knowing when they could arise.
I was diagnosed with acute lymphoblastic leukemia in November 1998 when I was 10 years old. I completed three years of chemotherapy and then in November 2002 I relapsed. When my treatment ended in 2005—chemotherapy and cranial radiation—I was 18 and no longer able to be seen at my pediatric centre. It was five years after my discharge, at the age of 23, when I learned about the POGO Provincial Pediatric Oncology AfterCare Program. I was so excited to self-refer to the Program! Ever since, I have been seeing my team at the POGO AfterCare Clinic at Princess Margaret Cancer Centre yearly and it changed everything for me in terms of my survivorship.
Every 1 – 2 years since my first POGO AfterCare Clinic appointment, I receive an echocardiogram because some of the drugs I was treated with can be cardio toxic. It is reassuring to know that the team takes my heart health seriously and I am monitored for possible long-term effects. My last echo, in 2021, showed some irregularities with which they wanted to follow up. To many, this would be scary. To me, it is helpful to know that I have a team of medical professionals communicating and working with me around next steps in my care.
When I first started my follow ups with the POGO AfterCare team, we had some discussions about fertility. I admit I wasn’t really interested in the topic at the time, so I never took the opportunity to pursue their referrals. However, when I turned 27 and they asked me if I wanted to explore my fertility options, I said, “yes!” I had two referrals over two years and both physicians helped me better understand my options.
In 2017, at age 30, I was diagnosed with a secondary cancer (unrelated to my childhood cancer), and that prompted me to request a referral to a genetics program to see if I had any genetic predisposition to cancer. While I’d had a similar referral before, this time around everyone agreed it was more important than ever. The outcome is that I now have a more thorough understanding of my risk from a genetics perspective.
I have also been referred to neuropsychology (for testing for accommodations for school), imaging (MRI, ultrasound and bone density) as needed or supported by research, physiatry (for pain management) and ophthalmology, amongst many other areas of care. I am also reminded by my team to see my optometrist for any eye issues, my dentist for oral health and to make sure I see my primary care provider/family doctor in between visits for other health issues that are not cancer related.
But the mind is a funny thing. Yes, I trust my AfterCare team and have the utmost confidence they would continue to support any kind of referral I need. Yet, I worry that I may be at risk of thyroid and breast cancer due to the radiation I received as part of my treatment when I relapsed. My POGO AfterCare team is so kind to reassure me at every visit (literally) that I am not at an increased risk and they explain to me why. These ongoing conversations put my mind at ease and I am very appreciative of the time the team takes with me, each and every visit.
I realize now, that, alongside my primary care provider, the POGO AfterCare Clinic is the best place for me as a childhood cancer survivor. They are able to monitor for possible late effects and refer me to services within my cancer centre so that my care is in one place. If I ever have reasons to believe I need to be seen sooner because of a cancer-related side effect, I know I can call or email the Clinic and they will respond accordingly.
AfterCare is not about seeing my healthcare team for everyday issues, but ensuring that the treatment I had as a child does not impact me as an adult and, if it does, it can be caught early. It makes me feel secure, listened to and in control of my survivorship.
Kirsten Efremov, MPH, is a childhood cancer survivor who has been monitoring her health annually in a POGO AfterCare Clinic since 2010. She earned her Master of Public Health at Brock University and works at POGO supporting the organization’s survivorship, psychosocial and strategic initiatives. Kirsten believes in giving back to the community and volunteers with causes that support children and youth going through cancer treatment, and survivors of childhood cancer.