Patient Story – Sarah Brain
Giant Cell Tumour Right Distal Femur
“My journey starts in September 2021 where I had a night out with my husband, and we had a good dance! The following morning, I found my right knee was aching. Over the next few months, I experienced intermittent pain but not so bad that I felt the need to visit a doctor. I continued walking our dog daily and exercising in the gym with a small amount of discomfort. A few months later, I accidentally knocked my foot and felt my knee jolt. As the day progressed, the pain was unbearable, and I could no longer weight-bear. I visited A&E where they performed an X- Ray but nothing unusual was identified. I was sent home with crutches and pain relief medication while I waited for an MRI scan appointment.
The results of the MRI were a huge shock. I was told I had a suspicious lesion in my distal femur bone that was most probably a tumour. The consultant could not tell me anything more at that stage and referred me from his care in Bristol to the Royal Orthopaedic Hospital (ROH) in Birmingham as they were the experts and could take the diagnosis further.
I received a call from the ROH several days later. The nurse said that my case had been discussed at the MDT meeting and I would need to travel to Birmingham to see a consultant. In late February, my husband and I made the journey for the initial appointment where we met with Professor Jeys and his team. I was scared and emotional as I entered the room but was instantly put at ease by their caring manner. Professor Jeys talked us through the images and confirmed it was a bone tumour. He went on to say that the severe pain I had experienced which led me to A&E was most likely a fracture of the bone caused by the tumour. The plan going forward would be for me to return as a day case patient for a CT Guided Biopsy under general anaesthetic (GA) so they could identify the tumour.
The day of the biopsy arrived, and I was anxious as I had never experienced GA before. My husband left me at the doors of the day-case unit where I was greeted by a lovely nurse. In fact everyone I met that day was caring and explained what was happening clearly. The procedure went well, and I returned home.
I had a call a week later to tell me that histology confirmed the tumour to be a Giant Cell Tumour (GCT) and I would need to return to see a consultant who would explain more about treatments available. At the appointment, we met with Mr Kurisunkal. He told us that the results were in fact inconclusive but pointed to GCT and I would need a second biopsy. It was upsetting to hear this, but he went on to explain that GCT’s are not always easy to diagnose and of course, he needed to be sure that the operation he performed would be the correct one.
Following the second biopsy, Mr Kurisunkal told me they had ruled out cancer as far as they could and that with my consent, he would perform Intralesional Curettage to remove the tumour, a healthy margin of bone and replace with cement. Every detail was covered including the risks and outcomes of the procedure.
I was admitted as an inpatient to ROH in April 22. Knowing how fantastic the staff are strengthened my courage and this time was no different. I must mention the theatre assistant who sat with me in the anaesthetic room for about 30 minutes before I went in for surgery. We talked about so many things including our favourite curry and cocktails. As I went off to sleep, he held my hand and told me he had ordered me a cocktail for when I woke up. I went to sleep smiling.
A few hours later, I learnt that the operation had gone well, and the tumour was removed successfully. The next day I was up and about with the help of the nurses and physiotherapy team. I felt ready to go home and start my recovery. I had to partial weight-bear with crutches for six weeks along with exercise and rest.
I returned to see Mr Kurisunkal seven weeks after surgery. At this appointment, I had an X-Ray and he informed me that everything looked great. It was such a relief. I was now able to start walking our Cocker Spaniel, Ernie which I had missed doing so much.
GCT’s are benign but aggressive tumours and the follow up is a scan and consultation every three months for two years and every six months for a further three years. Unfortunately for me, my tumour proved to be aggressive.
Within a few months of surgery, I was experiencing pain in my knee. I called the oncology team, and they booked me in for an MRI and consultation. A week later, I learnt I had tumour regrowth and further treatment would be needed. I had the option to have repeat Intralesional Curettage or Radio Frequency Ablation (RFA), to burn the regrowth. With the guidance of Mr Kurisunkal, I opted for RFA as the procedure is not so invasive and has a quicker recovery. This surgery was in November 22 and the histology confirmed recurrent GCT. As we got nearer to my next three-month check, the pain returned. Again, I called the team and was given an appointment to return sooner. MRI confirmed that I had further tumour regrowth. I underwent another round of RFA in early March 23. The histology was not conclusive following this procedure. Within two months the pain was back! A call to the team and I was booked for an MRI and consultation. Unfortunately, there was further regrowth, and it was agreed that the best option would be to have repeat Intralesional Curettage surgery. In June, I was admitted as an inpatient where Mr Kurisunkal removed the cement block, tumours and replaced with new cement and bone graft. The recovery was six weeks on crutches as before. Histology confirmed recurrent GCT.
It is now October 23 and I have just reached a milestone in my journey having my first all clear three-month check. I cried with relief at the news. I am still experiencing some pain but will be having further physiotherapy to help.
I am overwhelmed by how many amazing, compassionate, and hardworking people have been part of my journey. My family and I are truly grateful to Professor Jeys, Mr Kurisunkal, the whole oncology team and all the nursing staff for their expertise to get us through this tough time in our lives. With their support and that of my family and friends, I am almost back to full fitness and feeling positive for the future.
The ROH is going to be part our lives going forward. We are pleased to support the Royal Orthopaedic Charity (ROC) with a monthly donation as a gesture of our gratitude. We hope that the money can go toward making the experience of other patients as good as ours”
Sarah is a long term donor for Royal Orthopaedic Charity and has donated over £500 over to the Charity to support patient wellbeing projects across the hospital. We are so grateful to Sarah for both her ongoing support as well as sharing her story with us.
If you would like to share your story, contact the Charity team on ROC@nhs.net.