1. Can you tell us a little about how your journey began – how did you first realise something wasn’t quite right, and what led to your diagnosis of a giant cell tumour?
I’d had intermittent left knee pain for a few years before I was diagnosed – I had a normal X-ray and Ultrasound when the knee pain first started and was reassured by that. In early 2024 I noticed the left knee pain had progressively gotten worse and was more persistent over several months. Assuming the knee pain was again muscular in origin, I tried my best to do everything that I could to try to improve it, including going to the gym, doing physiotherapy and wearing a brace – at times it felt like this was working.
Eventually, the knee pain was hard to ignore – it started causing some patella instability, a limp, and was painful at rest. I knew something was not right so I was eventually referred to an orthopedic specialist for a review as an outpatient. Prior to my review, I was indoor bouldering with my husband and his friends and as I jumped down from the climbing wall – my knee buckled and I felt immense pain. I was unable to stand and walk so was taken to ED via an ambulance. The initial X-ray not only showed a fractured femur, but also an underlying bone growth that I was not aware of. This unexpected finding led to a 24-day hospitalisation with multiple investigations including a CT, MRI and bone biopsy which confirmed a ‘Giant Cell Tumour of the Bone’ in my femur.
2. What treatment did you receive and what was your experience and recovery like?
Due to the Giant Cell Tumour, the fracture was quite extensive and the knee joint was too damaged to repair. I ended up having a ‘distal femur replacement’ surgery – something which I had not anticipated would be much more extensive than a total knee joint replacement. The surgery involved replacing the bottom half of my femur and the top of my tibia with internal prosthetics to make a new knee joint.
The diagnosis and operation was all very unexpected and undoubtedly for me the most life-changing thing to happen to me at 31 years of age. Being so rare, and affecting approximately 1 in 1 million people, I only came to know what a Giant Cell Tumour was after being hospitalised with it. Despite being benign in nature, the rarity of the condition and the nature of it being able to spontaneously recur is a scary concept to live with. The hardest thing to accept was being told that I would not be able to run or perform high-intensity activity with this type of prosthesis – such activities would wear the joint out over time, thereby hastening the inevitable joint revision surgeries that my surgeon mentioned I would need in the future.
The recovery after the operation was a constant mental and physical battle of having unrealistic expectations of where I wanted to be and giving my leg time to physically recover and heal. I felt alone in that a distal femur replacement operation was rarely done and so I was uncertain about how I was tracking with my recovery.
8 months on from my operation, I continue to rehabilitate. I have come to realise and accept that the prosthesis is a part of me now. I have limitations in my knee flexion and function and have had to re-learn how to walk again. I hope to be able to climb mountains with confidence and without hiking poles – one of my favourite hobbies before my injury. I am grateful for the orthopedic care I have received and I am hopeful to achieve more normality with my leg as time heals too.
3. What has your experience been like as a patient, especially as a GP yourself? Was there anything about the care you received that stood out or surprised you?
Even though I have worked in hospitals for many years, it all felt so new and scary being on the other side. Perhaps the biggest insight into this experience for me as a GP is how crucial rehabilitation is after an injury/hospitalisation. I learned it needed a multidisciplinary approach as I consulted widely to support my recovery through the help of physiotherapists, sports physicians, and orthotists to name a few. Recovery is a long and mentally challenging process – I would never have been able to do it without the support of these professionals, my family, friends and colleagues.
I had 3 months off work as a GP and returned enlightened by my own experiences within the healthcare system. I was impressed by the care delivered by the specialist tumour surgeon, Andy, and the National Sarcoma Service who deliver empathy and continuity of care to patients in New Zealand who have orthopedic tumours.
I see the giant cell tumour as something that has opened new avenues for me. It has made me a better clinician with a more empathetic and holistic understanding of recovery. It has also introduced me to a community of amazing people on their own journeys to recovery.
4. Who or what has helped support you through this time?
My immediate family – including my parents, husband and brothers have been my biggest cheer-leaders. They have been rooting for my recovery from the outset of my injury. There were many setbacks in my injury that challenged me – I was in a delicate emotional state and struggled to comprehend any news that meant my progress may be hindered. Even with all the support I received, it was a mental roller-coaster and I am deeply grateful for the strength and positivity of those around me that gave me the courage and motivation to push through the self-doubt.
One of the things that I found useful to process the whirlwind of emotions that I experienced (grief, anxiety, pain, and loss) was writing them down in a journal. This eventually became a short novel that I published for my friends and family. This is something that I will look back on and treasure in the future as it recounts such a significant period of my life.
I have also had the pleasure of being able to connect with one other person in NZ that has had a Giant Cell Tumour of the bone and the same surgery as me. It has been comforting to be able to share our progress and recovery milestones together.
5. Is there any guidance or advice you would like to pass on to others who may be in a similar position or undiagnosed?
Firstly, don’t presume that being young precludes you from serious medical conditions. If you feel that something is not right – get it checked out early.
Maintain a positive outlook and hold on to hope – don’t dwell on losses. Remind yourself of what you have already accomplished and use that inspiration to think about the things you will be able to achieve going forward.
Remember – you are not in this alone. Having a strong support system will get you through adverse events. Hold on to your loved ones, they are on this journey with you.