He shares his story to help raise awareness and give hope to other rare cancer patients.
To get to the present day, I think my story really starts back in the early-mid 90s, when my left tibia suffered a spontaneous fracture whilst walking across the sports hall. A biopsy was taken, and thankfully a benign cyst was diagnosed.
My leg was set in a cast and, despite what in hindsight was a very long healing process, life continued as normal... albeit with what we affectionally nicknamed my dinosaur leg (due to subsequent bumps and curvature of the tibia to the front of my leg).
Fast forward to March 2020. I was in my late 30s and it was at some point over the next twelve months I started to notice what I thought was a new lump on the front right side of my left tibia.
Despite no pain or discomfort, I eventually decided to make an appointment with my GP in May 2021, and was sent for an X-ray at the local hospital. I was immediately sent through to A&E to be seen by a doctor. They took routine blood samples, which all came back clear, and I was told an appointment would be made to see an orthopaedic consultant.
The X-ray imaging was inconclusive, so I was sent for a full body contrast MRI and then a follow-up lower leg MRI. For the next two to three months, I received intermittent updates from the GP, saying there were no updates on the imaging other than they were being escalated from team-to-team.
Then, in September 2021, I received an appointment to be seen at the North West's specialist Robert Jones & Agnes Hunt Orthopaedic Hospital (RJAH) in Oswestry. Explaining my history, I was told that it wasn't anything to worry about, and they were certain it was osteofibrous dysplasia (OFD), but to be 100% conclusive it was recommended that I undergo a CT guided biopsy.
A few weeks after the procedure, I was given my diagnosis. It wasn't OFD but was adamantinoma, a very rare primary bone cancer (it accounts for less than 1% of all primary bone cancers) and stretched along the majority (25cm) of my left tibia.
They couldn't say whether the fracture in the 90s was originally adamantinoma, or if it was the cause of the new lump, or if it was pure coincidence. There is still so little currently known about it.
My only treatment option was surgical excision, as adamantinoma isn't treatable through chemotherapy or radiotherapy. My first thought was great, that's a win! I was then told the surgery was too complex to be carried out at RJAH, and I was referred to the Royal Orthopaedic Hospital in Birmingham.
From October 2021 - January 2022 I lost track of the number of appointments, X-rays, MRI and CT scans I had in Birmingham where I met my orthopaedic oncology consultant, Vineet Kurisunkal, and the plastics team led by Deborah Foong. At each appointment we discussed the options and possibilities including an autograft, allograft, titanium replacement, amputation and skin grafts.
It felt like the list was extensive, each option with its own risks and rewards, but it was something that the team took me through clearly and carefully.
In December 2021, a late option was presented to me when I was introduced to Paul Fenton, an orthopaedic and trauma consultant from Queen Elizabeth Hospital in Birmingham.
Paul specialises in external fixations and limb reconstruction and, although not guaranteed, he thought that they might be able to use an external fixator and re-grow the bone from the top and bottom of my leg, to eventually join in the middle. Although this would be a more prolonged recovery with its own risks, after speaking to family, friends and my clinical nurse practitioner about the aftercare available, I decided this was my preferred route.
I had my first surgery in January 2022. Doctors removed 27cm of my tibia and just managed to fit the external fixture, and there was no skin graft taken.
Going into the surgery not knowing what my outcome would be, I remember waking up and seeing my toes and thinking, OK, I've still got my leg, then I managed to wiggle my toes, then I noticed that they hadn't touched my right leg. Those three small things felt like major wins!
24 hours after surgery, I was given the news that they'd removed all of my tumour with clear margins. This was another major win, which meant I could now focus on recovery and the next stage of my journey.
I quickly adapted to life with an external fixator thanks to my partner, David, as well as my family and friends... although it wasn't without setbacks. I had a major infection, which required two rounds of emergency surgery to sort, and a further 1cm of bone removed. Despite this, the team still managed to salvage my leg.
In July 2022, it was decided that the bone transport wasn't working as anticipated with very little in the way of new bone forming, so we should look at next options. Another surgery removed the wires and they put in a cement spacer, but an X-ray taken in surgery showed signs of bone formation, so we agreed to wait and see before doing anything further.
In January 2023 and after another infection, 11cm of useable bone had regrown and I underwent a vascularised fibula transfer. This involved the fibula bone and blood supply from my left leg being moved forward to fill the remaining gap in my tibia, which was then pinned and plated in place. Everything went to plan and still no skin grafts were taken, another win!
I'm writing this in September 2023, almost two years to the day of my biopsy. Recovery is slow but progressive, X-rays show union of the transfer and I've been gradually building up putting weight through the leg from zero, to 25% and currently now at 50% as the bone continues to strengthen.
I'm having weekly physiotherapy to try and get my ankle back working and, once I get the all clear to fully weight bear on my leg, the light will be bigger and brighter at the end of the tunnel.
I still have quarterly chest X-rays to check there's no spread. One things for sure, I'll be so glad to see the back of the crutches!
I cannot fault my team of surgeons all the nursing staff in Birmingham (and of course my partner David, who has literally and figuratively done all the leg work) for the care and dedication they have given me over the past two years.
My care has been second to none and they've explored and done everything possible to salvage my leg. It's not all been smooth sailing, and I've not encountered the impact and struggle of undergoing chemotherapy/radiotherapy, but a positive outlook and set of realistic goals and milestones and an incredibly supportive employer has really helped me focus and see me through, given the longevity of my recovery.
I'd argue that it has been harder for those around me, than it has myself.
Being in and out of hospital over the past few years, it was amazing to see how many people undergo treatment for primary bone cancer, but how little awareness or funding there is available. I came into contact with the Bone Cancer Research Trust around 10 months after my first surgery (I was told to avoid researching adamantinoma online) and they do an incredible job. I wish that someone had told me about them sooner.
The Bone Cancer Research Trust does amazing work at building a supportive community and raising much-needed money to further research that will help understand the causes of the disease and help develop treatments for primary bone cancer.