As part of Patient Panorama’s commitment to listen to patients, our ‘Patient Voice’ series aims to shine a spotlight on peoples’ experiences with various conditions. We will be asking people to share their journey from pre-diagnosis to where they are now, reflecting not only on the challenges they have faced, but also their achievements they have worked hard for.  Insights from these interviews will be used not only to help refine our own approach to patient research, but also raise broader awareness about each condition.

In recognition of Rare Disease Day 2024, HRW Patient Panorama, our dedicated patient research team, sat down with Rebecca, Central Admin Lead at HRW to share her journey with Tenosynovial Giant Cell Tumour (TGCT) which affects 4 in 1,000,000 people.

Can you start by sharing your experience with the discomfort in your knee?
About ten years ago, I began experiencing minor discomfort in my right knee. It all started during a walking holiday with friends in the Yorkshire Dales. I knew my knee would struggle with the 12-mile hike, so I wore a knee support. Over the years, the pain came and went, and I often felt as if my knee was slightly out of position. I could click it back into place and carry on without any issues, so this was my approach for several years.

When did it start to feel more serious?
It was about five years ago whilst at work, I got up from a swivel office chair and immediately felt my knee was out of position. I couldn’t fully straighten or bend my leg. Despite carrying on with my day, the pain became excruciating later that night, and I couldn’t bear weight on my leg. After visiting A&E, I was diagnosed with a partially dislocated knee, where my patella was ‘subluxing’ in and out of its position. Over the next few years, the flare-ups became more frequent, with my knee feeling permanently hot and visibly larger than the other. Despite numerous visits to my GP and physiotherapy sessions, the relief was minimal. Eventually, in January 2023, I decided to see a private consultant for an MRI, as that hadn’t been offered to me on the NHS.

What were the results?
The MRI revealed something unusual in my knee, prompting a referral to a specialist team in Oxford.  After a biopsy, I was diagnosed with Tenosynovial Giant Cell Tumour (TGCT), specifically the ‘diffuse’ form, which is extremely rare.  TGCT is a benign condition where the synovium in a joint thickens into tumours.  This can result in pain, swelling, locking and mobility problems of the joint. While relieved it wasn’t cancer, I learned that DTGCT is challenging to treat and has a 30-50% recurrence rate even after surgery.

Did they talk you through the treatment journey?
The treatment is carried out by an Orthopeadic Oncologist with the first line of treatment being surgery to remove the tumours. There are some drugs available to shrink the tumours, but they are chemotherapy and at this stage, I wasn’t offered any as my tumours were diffuse.  Some of the drugs with fewer side effects are also not yet approved outside of the US.   I was told the tumours were growing all the way through the joint and I would need a total synovectomy, which is where they remove the lining of the joint capsule.  It would need to be open surgery as they wouldn’t be able to reach it using the key-hole approach. I was scheduled for surgery at the end of September.

What was that like?
The surgery went well and I was sent home after 5 days to recover. It’s been a frustratingly long and painful recovery.  I’ve also noticed that recovery from these events is definitely not linear! At 8 weeks post-op, I had a second procedure called an MUA – manipulation under anaesthetic, as my knee was not bending more than 50 degrees.  I then spent 24 hours attached to a passive motion machine which was continually bending my knee.

How are you feeling now?
It’s been 5 months since my surgery and I’m still doing daily physio exercises.  I can walk about 2km before needing to stop for a break and I can go upstairs, but I’m still building up the strength to come back down again!  That always takes a little longer. I now bend my knee to about 115 degrees, not quite the same as my good leg, but near enough!  I’ve been told that I’m looking at a full year post-op before I’ll feel back to normal.

I still have tumours in the back of my knee, but as they sit outside of the joint, they don’t affect function and I don’t feel any symptoms from those.  As TGCT tumours are typically slow growing, we agreed that I will have an annual MRI to check on the progress.  Surgery on the back of the knee can be more complicated and leave you with more problems post-op.

TGCT is something that I will live with and continually monitor.  Despite this growing for around 10 years, I still feel at the beginning of my journey.  I’m in a patient support group which includes sufferers from all over the world, as there are not that many of us.  Other people in the group have had in excess of 10 surgeries, some have had total knee replacements and frighteningly, a couple of people have had their legs amputated above the knee.  I try not to dwell on that too much!

At this point, all I can do is carry on with my exercises, build up my strength and hope that I will be in the lucky 50% who never have another recurrence inside the joint capsule.

We would like to thank Rebecca once again for taking part in this discussion as part of the ‘Patient Voice’ initiative from Patient Panorama and helping us raise awareness for TGCT.

By Rebecca Cooper


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