Reflections on Advances in Pediatric Oncology Survivorship and AfterCare
Eleanor Hendershot is an experienced pediatric oncology nurse at McMaster Children’s Hospital, whose career spans over 30 years, including roles at SickKids and Princess Margaret Cancer Centre. She is deeply focused on survivorship and AfterCare and is a dedicated advocate for evidence-based compassionate follow-up care for childhood cancer survivors.
In reflecting on my last three decades working in pediatric oncology nursing, it’s evident that the field has undergone remarkable transformation. In particular, with my focus on AfterCare for the past 13 years, with experience across leading institutions, I’ve witnessed how advances in therapy, supportive care, and clinical research have significantly improved outcomes.
The majority of children are not only surviving cancer but also living long and productive lives. This progress has shifted attention toward survivorship, with increasing emphasis on the long-term health and well-being of pediatric cancer survivors.
Within survivorship care, the Children’s Oncology Group has developed evidence-based guidelines (www.survivorshipguidelines.org) to support routine screening for late effects of cancer and its treatment. These late effects are influenced by the type of disease and individual treatment exposures (chemotherapy, radiotherapy, surgery), and may include second malignancies, organ dysfunction (cardiovascular, auditory, bony, renal, pulmonary, endocrine, neurocognitive, etc.), and psychosocial concerns. Importantly, late effects may emerge years or even decades after therapy ends, making survivorship care an essential component of comprehensive oncology practice.
One of the most significant recent advances in this field is the refinement of late-effects screening based on new evidence, research and expert consensus. A key example is the monitoring of cardiomyopathy (disease of the heart muscle) in survivors treated with anthracyclines (a type of chemotherapy used to treat certain types of cancer such as leukemia and lymphoma). Until recently, guidelines recommended lifelong echocardiograms for all survivors, regardless of cumulative anthracycline dose. New evidence, however, has demonstrated that survivors who received less than 100 mg/m² are not at increased risk of cardiomyopathy and therefore do not require lifelong routine echocardiographic surveillance.
Although this adjustment may appear modest, its impact is profound. Survivors of leukemia, the largest survivor population, typically receive low cumulative anthracycline doses. For these patients and their families, lifelong counselling and repeated cardiac screening created unnecessary anxiety and reinforced the sense of living under ongoing medical surveillance. From a cost-benefit perspective, routine echocardiography in low-risk patients carried significant cost and resource implications without measurable benefit.
As part of the updated guidelines, ongoing heart monitoring is no longer required, allowing leukemia survivors, in some instances, to be discharged from follow-up care once they are ten years post-therapy and have reached the age of 18 or if they are a teenager when diagnosed until both criteria are met.
The benefits of this targeted approach extend well beyond medical outcomes. By reducing unnecessary tests and clinic visits, survivors and families gain greater peace of mind and some relief from the intensity of lifelong surveillance, while healthcare systems benefit from more efficient use of resources. Just as importantly, minimizing disruptions to education, employment, and social development allows survivors to move forward in their lives with greater confidence. This balance—protecting long-term health while recognizing that not all survivors carry the same risks—has become central to modern, individualized survivorship care.
In reflecting on the evolution of pediatric oncology nursing and survivorship care, it’s clear that our field has made tremendous strides—not only in improving survival rates but also in refining how we support survivors long-term. The shift toward individualized care, such as updated cardiac screening guidelines, has reduced unnecessary interventions and empowered survivors to live with greater confidence.
Since 2001, POGO has been a cornerstone in supporting survivors of childhood cancer through its AfterCare Clinic Program network. Today, eight POGO AfterCare Clinics across Ontario serve more than 5,000 survivors, helping ensure that children, adolescents and young adult survivors of childhood cancer receive the essential follow-up care they need to lead healthy, fulfilling lives.
This contribution to “Reflective Practice Corner” was written for the fall 2025 issue of the RePORTer by Eleanor Hendershot, MN, BScN, RN, Pediatric Nurse Practitioner, McMaster Children’s Hospital.
Reflective Practice Corner, a standing section in The RePORTer—POGO’s Nursing Newsletter—features reflections from nurses across the province, offering insight into their experiences. It also invites readers to pause and consider the questions posed.
Poop and Farts: The Inside Scoop on My Colonoscopy
Now, many people will tell you that going through cancer changes you and gives you a new outlook on life, and in many cases, that is true. That said, I think it is safe to say that much of my personality has remained the same from before my treatment. This year I’ll be turning 36 years old and I’ve been cancer-free for over 20 years. I believe that one specific aspect of my personality aligns with most people’s inner child:
"I think poop and farts are hilarious!"
Is it childish and gross-out humour of the lowest order? Yes, but it is still funny. I mean, a well-timed fart or good old poop joke still has me laughing. And my juvenile sense of humour has been somewhat useful when I go to my check-ups, where, inevitably, one of the questions I get is about poop or, in medical terms, “bowel movements.” Due to my treatment, my pancreas doesn’t entirely work and things can get a bit messy, so, it’s possible that I get the poop questions more than others do.
Anyway, during one of my recent POGO AfterCare Clinic appointments, my health team suggested that I get a colonoscopy due to the type of cancer treatment I received as a child and the fact that there is some family history of colon cancer on my dad’s side. (This part was not funny.)
Both my parents have had colonoscopies, and they offered some advice based on their experience, like do not eat certain Jell-O colours as they dye your insides. But, most importantly, they told me that in both their experiences, the worst part was not the procedure itself but the purge the day before.
For those of you unaware of the process, a few days before a colonoscopy, you start a low-fibre diet with no red meats. The day before, you can only have clear liquids and take what I would call “super laxatives”...and oh boy, do they work. One of the late effects of my cancer and treatment that I regularly deal with is spending more time close to the bathroom, but this was on a whole other level. I believe several texts to my mother included the words, “Oh God, why won’t it stop?”
The actual colonoscopy wasn’t that bad. I experienced a slight discomfort at first, but that was about it. And it is really freaky to watch the camera work its way through your colon.
During my procedure, they found a total of seven polyps (this is a lot). Luckily, the gastroenterologist was able to remove all of them and the lab results showed none were cancerous. The bad news is that because they found so many, I have to go back in three years rather than the regular ten.
While I don’t look forward to my next visit, I’m glad that I went because now I know that my colon is healthy at the moment and that the polyps that were removed don’t have the chance to turn into something much worse. One of the many benefits of going to a POGO AfterCare Clinic is that the doctors know your diagnosis, treatment protocol and what late effects need to be monitored.
Believe me, as a pessimist, I know that it sucks to go through the hassles of test after test, and I find myself thinking, “What if?” But I just remember that if they do find something, it’s better if they find it earlier rather than later.
On the positive side, I now have medical proof that I have a tight butt; I refuse to look at it any other way!
You can read more about Jamie’s cancer experiences including his challenges with mental health and his brush with hockey fame.
POGO Connects Childhood Cancer Survivors to Much-Needed Primary Care
Many childhood cancer survivors attending a POGO AfterCare Clinic report that they do not have a primary care practitioner. In fact, survivors are concerned that because childhood cancer is a relatively rare disease, most primary care practitioners are unlikely to have expertise in managing the late effects of treatment.
The main purpose of POGO AfterCare Clinics is to provide follow-up care for survivors of childhood cancer to ensure appropriate monitoring of long-term and possible late effects associated with the original disease and its treatment. Most survivors are seen in POGO AfterCare Clinics only once a year. But for many, particularly those living in rural or remote communities, even once a year is a challenge.
“It is critical that every survivor of childhood cancer has a family doctor,” says Dr. Stacey Marjerrison, POGO AfterCare Program Director, McMaster Children’s Hospital. “The POGO AfterCare Clinic team is focused on the late effects of the treatment, while the family doctor is focused on all aspects of wellness. If we identify any important late effects, like heart or lung problems, we need to be able to work with the family doctor to make sure the childhood cancer survivor continues to get the best care through their lifetime.”
POGO AfterCare Aims for Shared-care Partnership with Primary Care
Following an extensive consultation, POGO, through its Childhood Cancer Care Plan: A Roadmap for Ontario 2018 – 2023, defined a strategy to engage primary care practitioners and family health teams in the care of childhood cancer survivors. Beginning in 2019, the seven POGO AfterCare Clinics began a coordinated and concerted effort to make these connections. The goal is a shared-care partnership, fostering two-way communication and support between the primary care practitioner and the survivor’s AfterCare team, with the latter providing information and education about childhood cancer and its potential late effects.
“As a childhood cancer survivor, my health care is often complex,” says Kirsten, a young adult, who attends the POGO AfterCare Clinic at Toronto’s Princess Margaret Cancer Centre, 50 kilometres from her home in Brampton, Ontario. “The long-term side effects of chemo aren’t 100% known. The POGO AfterCare Clinic team is specialized to look at the drugs that I took during my treatment and allows me to receive testing and screening that might anticipate late effects. This allows my family doctor to focus on my general health and wellbeing. Without either side of my medical team, I would not be able to ensure I'm receiving optimal care.”
UPDATE: Dedicated staff across the POGO AfterCare Clinics have completed discussions with 131 primary care practices about accepting a survivor. Many of the participating primary care practices serve northern, rural and remote communities.
Caring for Survivors Increasingly Important as Population of Survivors Grows
Researchers tell us that up to 80%1 of childhood cancer survivors will experience at least one or more chronic health conditions by age 45 due to treatment they received to cure their cancer. As early as the 1950s, clinicians began to see that many more children were beating cancer, but that was only half the battle. Children treated for a childhood cancer were surviving only to develop significant therapy-related health problems later in life.
With the increasing success of childhood cancer treatments, caring for the growing survivor population with their unique healthcare needs becomes even more important. From the POGO Surveillance Report, we know that as of 2017, nearly 20,0002 children and youth in Ontario are survivors of childhood cancer. And right now, about 1 in 460 adults between the ages of 20 and 39 years is a childhood cancer survivor. As this population ages, their health care needs related to treatment late effects will rise.
The History of POGO AfterCare
In early 2001, POGO launched a network of survivorship clinics located in London, Hamilton, Toronto, Kingston and Ottawa for pediatric and adult survivors of a childhood cancer. POGO AfterCare Clinics, staffed by oncologists, nurses and allied health professionals, provide long-term follow-up care, including clinical examination for signs and symptoms of late effects, recommending tests such as an echocardiogram for possible heart problems in patients who received certain therapies, and referring survivors for breast and/or colorectal cancer screening based on clinical practice recommendations that take into account their cancer treatment history.
1Nathan PC, Agha M, Pole JD, Hodgson D et al Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv 2016
2Alive at least five years, or close to 5 years, after diagnosis.
A Genetic Mutation: A Lifetime of Cancer Screening
Adapted from Yasmin Nasrati's speech at the the annual Cadillac Fairview Run
When I was a kid, my big brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Sadly he passed away. He was only 12 years old.
Shortly after his death, his oncologist at SickKids Hospital suggested that all of his siblings get genetic testing. That is when my family learned that I have an inherited gene mutation, which increases my risk of acquiring malignancies and other serious health concerns. And so began my lifelong annual cancer screening.
I was 7 years old.
Because of the regular screenings, they discovered my brain tumour early. At age 13, I received 33 daily radiation treatments and I was cured….per se, but I have certain side effects because of it.
This might shock you, but I am actually a four-time cancer survivor.
At age 15, I was diagnosed with cancer of my small bowel— and treated with surgery and 12 cycles of chemotherapy.
When I turned 18, I aged-out of the pediatric system. This was a very stressful time because all of the staff at SickKids Hospital are trained to take care of children, both physically and emotionally, so I felt very safe. At 18, I was still really young and didn’t feel ready to leave the children's hospital.
My regular cancer screenings continued at Princess Margaret Hospital. At age 22, I was diagnosed and treated for colorectal cancer and a year later, breast cancer.
In addition to screening, I am monitored at the POGO AfterCare Clinic on a regular basis for late effects. Actually all survivors are monitored, not just those with a genetic mutation. This is because even though the survival rate is up to 86%, as many as 60% of young adults will face a lifetime of complications that are a direct result of their childhood cancer or the treatment they received.
One of these complications is learning difficulties, including slowed rate of information processing, poor working memory, increased forgetfulness and more. These are all things that I struggle with on a daily basis.
I am 23 years old, and at this stage in my life, my education is my main priority, but for a while, my success at school was at risk. It was through my nurse practitioner at the AfterCare clinic that I was introduced to my POGO counsellor.
POGO’s academic and vocational counselling program is a donor-funded program that provides personalized support for childhood cancer survivors who need extra help to transition from high school on to college, university or into a vocational program.
Counsellors work one-on-one with survivors to provide them with special accommodations to complete tests and schoolwork; to help them match their career goals with their abilities; to facilitate scholarships targeted at survivors; and link survivors with the appropriate disability services and supports within colleges, universities or the community.
I am proud to say that I am now a college graduate and currently a student in York University’s Sociology and Human Rights Programs.
By Yasmin Nasrati
I recently had the opportunity to represent both the Hospital for Sick Children and POGO at the annual Cadillac Fairview Run/Walk, which raised $250,000 through sponsorship and employee participation.
A Lifetime of Care for My Lifetime in Care
At four, I was diagnosed with stage 4 rhabdomyosarcoma, in my case a tumour the size of a baseball in the lower abdominal area near my bladder. At 20, I have lived almost my entire lifetime in cancer care. And alongside my parents, POGO, through its many programs and services, has been with me every step of the way. POGO teams have supported me through treatment, which included eight rounds of chemotherapy and a series of surgeries at the age of four. And now, 16 years later, as I manage the late effects that have developed as a result of my treatment, POGO AfterCare Clinics continue to support me.
Most people know that cancer treatment can be fairly aggressive, but what many don’t realize is that it can have serious side effects many years later. I continue to be monitored by oncology for second cancers. I need to see a cardiologist every six months because the toxic mix of drugs I was given has the potential to seriously lower my Ejection Fraction Index, which is the fraction of blood pumped out with every heartbeat. And I visit my internist annually because the surgeries that removed my tumour, also left a lot of scar tissue.
Until a few years ago, all of my follow-up care took place at SickKids where I was diagnosed and treated. When I turned 18, I graduated from the all-encompassing children’s hospital system, with its seamless management and coordination between departments, to the adult system (in most situations I am by far the youngest person in the waiting room!). While I have three new doctors spread across the city, luckily for me, and every childhood cancer survivor in Ontario, all of my follow-up care is still coordinated through a POGO AfterCare Clinic. So when my cardiologist wanted to change my medication, POGO teams were able to determine that it wouldn’t do any damage based on the treatment I had as a child. And when my internist wanted to do an exploratory procedure, POGO teams again intervened noting it could do more damage than good with the scar tissue that was built up over many surgeries.
As you can see from my personal story, childhood cancer requires a lifetime of follow-up care. I know POGO will be there for me over the next 20 years, 20 more after that and counting. Without the seamless care of POGO’s AfterCare Clinics, and survivor care programs, many young cancer survivors would fall through the cracks.
