Author: Cassandra Watson
Living with a chronic condition can feel like riding a never-ending roller coaster—minus the fun parts, of course. My journey started with a spinal tumour diagnosis in 2009 (myxopapillary ependymoma, if you are into those fancy medical terms) which led to several surgeries and radiation therapy. Unfortunately, I ended up with chronic pain to manage, but I have to say these treatments made a significant difference. While this experience wasn’t exactly a walk in the park, it motivated me to advocate for others facing similar challenges, especially around fertility preservation. I’ll dive into that part soon!
Photo above: Left: Cassandra after first spinal surgery. Right: Cassandra now.
“Could my past medical experiences have an impact on my ability to have biological children in the future?”
Transitioning from pediatric to adult care has been quite a journey, and it is still challenging at times. I went from having a dedicated team supporting me in every aspect of my life to feeling like I was navigating my health on my own. I was familiar with Princess Margaret Cancer Centre from my radiation treatment, but the whole experience was pretty overwhelming. I made sure to ask my POGO Aftercare Clinic Nurse lots of questions, everything from learning how to check for lumps in my breasts? to understanding the potential impact of my past treatments on my body. One particularly important question I had was about my fertility: Could my past medical experiences have an impact on my ability to have biological children in the future?
That single question changed my life.
“The emotional toll is substantial, especially since, despite all my efforts, there is no guarantee of success.”
Left photo: The daily medication injections for egg-freezing process
I learned that my AMH (anti-müllerian hormone) levels were low, indicating a low egg count, which led me to Mount Sinai Hospital’s fertility clinic. At 22 years old, the news that I didn’t have much time was a shock. I had to weigh my options: have a child soon, freeze my eggs, or consider alternatives like egg donation or adoption. In the end, I chose egg freezing, which significantly shifted my life plans. The treatments were tough and the costs made things even more complicated. The emotional toll is substantial, especially since, despite all my efforts, there is no guarantee of success.
My radiation treatment affected my fertility, which is a topic that doesn’t always get the attention it deserves. While fertility preservation is starting to come up more frequently in discussions with younger patients, it wasn’t something that was brought up in my discussions with my health team. I feel this gap in communication and resources is an important issue that deserves more attention.
Navigating my fertility journey has been quite an eye-opening experience. It is understandable that when you’re focused on managing an illness, fertility can sometimes take a back seat. But for many, the ability to have children is a big deal. It can be frustrating to miss out on preservation opportunities simply because of a lack of information. It feels a lot like missing the boat. And who wants to miss the boat?
These experiences have inspired me to become a voice for others in similar situations. Advocacy goes beyond just pushing for medical advancements; it is also about making sure patients have the information and support they need to make informed choices about their futures. By sharing my story at events like the 2024 POGO AfterCare Education Day and through this article, I hope to encourage others to ask the right questions, seek the information they need and stand up for their own needs. If there is one lesson I have taken away, it is that you sometimes must be your own best advocate.
Recognizing that my experiences can help others has truly changed how I view my health challenges, seeing them not just as a burden, but as opportunities to make a positive impact in the community. Through advocacy, I aim to bridge the gaps in care and ensure that the next generation of patients has access to comprehensive support, particularly when it comes to fertility awareness. As I continue on this advocacy journey, I am genuinely excited to see what the future holds. My journey has shown me that while medical treatments are crucial, so is the support for the emotional and future aspects of life, like fertility. As health care continues to advance, let’s make sure to include these important conversations, making sure every child has the chance to lead a fulfilling life, both during and after treatment.