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.
Childhood Cancer: A Mighty Purpose Adapted from Lia Goh’s speech at the 2019 POGO PJ Party
My name is Lia Goh. I am 12 years old and I am a cancer survivor.
When I was three years old, I was diagnosed with acute lymphoblastic leukemia. I went through three years of treatments, including chemotherapy. I lost all of my hair; it almost grew back blonde!! And I received more blood transfusions than I can remember.
In fact, I don’t remember a lot about my cancer or its treatment.
Like how my parents had to take leave from work and my family rented an apartment in Toronto because I spent most of that first year in the hospital. Or how I was in isolation for a lot of that year. Or how I spent so much time in bed that my muscles atrophied, and my dad had to carry me everywhere.
I am old enough now to realize how lucky I am. I am lucky to have the support and love of family and friends. I am lucky that my parents had the freedom and the financial means to take the time off work to be with me. Many families don’t have that luxury. I am lucky to have benefitted, and I will continue to benefit, from the support of some incredible organizations, such as POGO.
And my dad always says that I am especially lucky to have benefitted from so many kids that came before me. From the research that has been done, and so many incredible services that have been created to support kids with cancer, their families and survivors like me.
From the time my brother and I were little, my dad would read a poem to us called “The Champion's Creed.” In it, there is a line that has always stuck with me:, “Dedicate yourself to a mighty purpose.”
I can’t think of anything more mighty than helping to beat childhood cancer. So, I feel responsible to do as much as I can for all the kids who are fighting this battle now and all who will be fighting it in the future.
Watch Lia deliver her full speech here. Video courtesy of Natasha McKenty.
A Healing Journey by Yasmin Nasrati
#BellLetsTalk #mentalhealthawareness
I am 23 years old, a college graduate and a current student in York University’s Sociology and Human Rights programs. My education is very important to me but it can be overwhelming sometimes. The workload combined with rising debt is stressful, while splitting my spare time between volunteering and family and friends has become difficult to balance.
I’m also a four-time cancer survivor. I had my first diagnosis, a brain tumour, at age 13. I’ve also had colon, colorectal and, most recently, breast cancer. At age 12, my brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Because screening was never done and we weren’t aware of our genetic disorder, my brother passed away from colon cancer. I have an inherited gene mutation, which increases my lifelong risk of acquiring malignancies and an ongoing anticipation of serious health concerns.
My life is filled with medical appointments, medical treatments, school work and other everyday commitments, and so I have always tried to be strong and brave, pushing my feelings down so I could just keep moving forward. But there is a price: fatigue, change in appetite, poor concentration, feelings of restlessness, loss of interest or pleasure in activities, irritability/lack of patience, dry mouth and shortness of breath/tightness of the chest, to name a few. These are all prominent when there are multiple things happening at the same time in my life.
Until recently, I just interpreted these events as “stressful,” but what I didn’t realize until I learned more about the symptoms of depression and anxiety, is that what I was feeling was not just stress, but a blend of mental health issues.
These symptoms don’t just affect me, they take a toll on the people around me. And while I know this is the time when I need to acknowledge what I am going through and ask for help, I often feel that I don’t have any options or that others won’t understand.
I realize that I play the biggest role in my own self-care. Yes, I am going through many issues, medically and psychologically, but what I’ve experienced so far has only made me stronger. So how can I use that strength to achieve a better quality of life? How can I minimize the stress in my life and increase the things that bring me joy, like volunteering? How do I find the time to connect with other survivors who understand what I am going through, when I feel exhausted from the medical appointments and school work? And how do I maintain a hopeful outlook when I know that I may continue to battle various cancers for the rest of my life?
To be honest, I haven’t exactly figured it out. But I do know that it is a process that I need to consciously work on each day, and that my psychological well-being is worth fighting for.
POGO's Childhood Cancer Care Plan has as one of five goals integrated psychosocial care at all stages of the cancer journey. A key objective is to ensure integration of psychosocial care into standardized care planning to improve quality of life for patients, families and survivors like Yasmin. Learn more.
Losing My Leg to Cancer
B.C. (Before Cancer), I was a competitive gymnast. I had also started dancing and had even participated in one dance
competition before everything changed.
While I was enjoying my new dance classes very much, I noticed severe pain, on and off, in my right knee. I didn’t understand why it hurt so much because I hadn’t fallen. I didn’t worry about it because as a gymnast, and a very active kid, I was used to getting aches and pains.
But then one day, I fell at home doing a very simple move I had been doing for years. I hit my knee against the floor and I was
in unbearable pain. An x-ray told us that nothing was broken. I was told to apply ice, take some Advil and avoid dance until the
swelling went down.
Three weeks later, my pediatrician viewed the results and thought they looked suspicious; perhaps a solid blood clot. He sent me to repeat the x-ray and referred me to The Hospital for Sick Children.
On March 14, 2016, we went to the 8th floor of the hospital, followed a long hallway and were in shock when we saw the words “Cancer Clinic.” That was the first moment it sunk in that something might actually be very wrong. The doctors told us they were 99% sure I had a tumour in my femur and sent me for an MRI and surgical biopsy. I was terrified; I had never had surgery before.
The tests confirmed that I had osteosarcoma, the same type of bone cancer as Terry Fox, and that it was not only in my femur, but it had also spread to my lungs.
We had a long meeting with the surgeon who outlined two options for my leg:
- Endoprosthesis would mean that the tumour would be removed, a metal rod
inserted to replace my knee and femur and my leg would be saved. That option
came with high risk of other complications, additional surgeries later in life and very
limited mobility. In other words, no dancing. - A surgery called rotationplasty, where doctors remove the leg from the unhealthy knee up to the thigh. They take the healthy lower portion of the leg and rotate it 180 degrees and reattach it to the upper thigh so the ankle faces upward. Essentially, my rotated ankle would function as my knee and I would require a prosthetic leg, but I would have greater mobility than with the other surgical option.
At the age of 12, I was given two months to decide which life-altering surgery I would have. My mom and I had many disagreements. She wanted me to save my leg, while I wanted to do the surgery that would allow me to continue to do gymnastics and dance rather than just watch from the sidelines.
On June 23, 2016, I had rotationplasty and within a few months of the amputation, I was trying on my new prosthetic leg. It wasn’t easy learning to walk again, but the motivation to do something I love helped speed up the process.
The time spent in and out of the hospital was an intense time for my family. In addition to the fear that comes with a cancer diagnosis, I had a hard time coping with being a little kid in such adult circumstances. My parents had to deal with new financial burdens. And my little sister, Lizzy, felt abandoned and thought we didn’t love her anymore.
During this time, POGO was there to help us in many ways. Our POGO Interlink Nurse came to our home and talked to Lizzy to help her understand that these hard times would end and everything would be okay. She went to my school and talked to my classmates to give them guidance on how to support me without overwhelming me during this very difficult time. And when my mom gave up her job to be by my side, the POGO Financial Assistance Program helped us out.
On December 30, 2016, I completed treatment for a battle I never imagined I’d fight. The following September, I started high school and signed up for several dance classes, including ballet, jazz and even tap! I have been regaining my strength to get back on stage.
I’m so grateful to POGO donors and I hope that you feel proud to support kids like me.
- Adapted from Emma Neagu's speech at the 2017 POGO PJ Party
In December 2017, at Emma’s regularly scheduled scans, they found that the cancer had returned in both her lungs. She had two surgeries to remove the metastasis. Emma is an active advocate in support of research for kids who fight cancer.
Related resources
Read POGO's Childhood Cancer Care Plan for a roadmap to support childhood cancer investigation and research.