A cancer diagnosis is many things. It’s scary, it’s confusing, it’s stressful. But getting to that diagnosis? It’s not always straightforward. For some, symptoms are really obvious and the diagnostic pathways for those symptoms are well known. But for others, like bone cancer (osteosarcoma), that’s not always the case.
According to a survey ran by the Bone Cancer Research Trust in 2020, patients wait, on average, more than 7 months and make 8 visits to multiple healthcare professionals before receiving an accurate diagnosis of osteosarcoma.
Lee is one of these patients. When he was referred to the Royal Orthopaedic Hospital, after a visit to his local A&E, Lee had been experiencing symptoms for six months. Here’s his story.
“I started to notice symptoms in September of 2023. I’d be going to bed and experiencing extreme pain down my right leg. I didn’t initially think too much about it and just carried on as usual. After a few weeks I did contact the doctors as I could tell something wasn’t right. An initial examination suggested that the pain was caused by pressure on the nerve (sciatica). I was prescribed co-codamol and provided with links on managing back pain at home.
Medication provided no respite, I started experiencing intense pain day and night. I also had inexplicable weight loss, losing 2 stone within 3 months.
In the period from September 2023 to March 2024, I had 11 contact points with healthcare professionals, of which on only 4 occasions I was afforded the opportunity for in-person consultation. A lower lumbar MRI and various tests proved inconclusive. I was advised that I had no “Red Flag Symptoms”. Following referral to a spine clinic in January I was advised that my issue was more likely to be muscular and that I should think about sports physio. I took this advice but found that my pain simply intensified. Things just weren’t adding up with the level of pain I was in. After a particularly difficult weekend, Gillian (my wife) and I decided that I should go to A&E. I was seen by someone in the Musculoskeletal (MSK) team at my local hospital. An initial examination didn’t highlight the cause of the problem but due to the fact that I was experiencing numbness in the groin, they suggested I get another MRI, just to be on the safe side.
It's a strange feeling – going from just one of many people in A&E to someone taking you to a small side room, and being offered a drink. An Oncology consultant comes in and says we’ve picked up a tumour on the scan, we’re confident it’s a bone tumour and we need to do some further tests. I was completely floored with this news. I had various other tests that afternoon and it was identified that it was primary bone cancer. Because of this and the location of the tumour, which was in my sacrum (the triangular bone at the base of the spine), I was referred to a specialist hospital – the Royal Orthopaedic Hospital (ROH).”
Things then moved very quickly
“Once the ROH was involved there was no delay. I had an appointment for a biopsy straight away. I couldn’t begin to put into words how fantastic the team is there. Consultants, staff on the ward, every part of the experience from being identified as having bone cancer to the operation to after in recovery has been superb.
Gillian and I lived with the news for a month before I felt able to speak to family and friends. I initially felt like I was going to be putting a burden on them without knowing the full facts. That caused so much stress – there were a few family events where I was just pure anxiety, I couldn’t eat, couldn’t enjoy being surrounded by my family.
The type of tumour I had, a Chondrosarcoma – a sarcoma of the cartilage cells, can’t be treated with radiotherapy or chemotherapy and I was initially unclear about whether it was possible to operate.
I first met my surgeon, Mr Kurisunkal in mid-April 2024. He confirmed that removal of the tumour was possible. This was a great relief although he went into the absolute detail about the challenges with surgery and aspects that could go wrong. He was keen to point out that the operation and recovery would be both physically and mentally demanding. Some of the conversations pre-op and the scale of the planning was overwhelming. My surgeon needed to bring a specific group of people into the operation – a spine surgeon, pelvic surgeons, a plastic surgeon – as he needed the right team for the complexity of the surgery. This also involved collaboration with the Queen Elizabeth Hospital, Birmingham to ensure life support facilities were made available should there be complications during the operation.”
From surgery to recovery
Lee was in hospital for four weeks and is now at home recovering. His mobility is improving slowly with ongoing hydrotherapy and physiotherapy. “I’ve always had a degree of independence, so it has been difficult feeling pretty useless. Gillian has been immense and it’s hard to imagine how I would have got through this without her continued support. In September she even found time to take on a rowing challenge, completing 100km in the month and raising £5000 for the Bone Cancer Research Trust.
“I feel really strongly about the mental health side of a cancer diagnosis and going through treatment. Never underestimate how it affects you, and your family, in ways you just don’t think about, from having those difficult conversations with friends and family to the reality of surgery and what recovery could look like.
“It may sound strange to say that I count myself lucky. I have so many people to thank for the fact that I am able to be positive about the future. Every three months I have an oncology check, you do get hardened to the fact that this may not be over, hanging on for the next check that things are all OK. However, putting this into context I can reflect positively on my ROH journey so far and am reassured that I am in very good hands.
What I can say is how friendly the staff are at ROH and how comfortable they make you feel. I attended intensive hydro / physiotherapy at the ROH, with the support of an expert physiotherapist to take you through different exercises, I found this a really beneficial and positive experience. I know it’s cheesy to say, but ROH is like my happy place because you’ve got good people around you, who understand exactly what I’ve been through. On my last visit I was fortunate enough to spend time with my Consultant who led the operation, Mr Vineet Kurisunkal, and my spinal surgeon Mr Simon Hughes, it was lovely to catch up on progress post op. Personally said, it really meant a lot.”
Education and awareness of bone cancer remains a challenge
Awareness of the signs of bone cancer is still a big challenge, as it’s incredibly rare. But it’s the lack of awareness that means diagnosis often takes longer than other cancers. There are several signs to look out for such as:
- Bone pain that gets worse at night, isn’t helped by painkillers and may get worse over time
- A lump or swelling near the skin’s surface
- Problems moving or stiff limbs or joints
- Tenderness over the bone or joint
- A broken bone
Other symptoms for bone cancer can include sudden/unintended weight loss, easily bruising, numbness and pain with tingling, feeling tired or breathless.
The Bone Cancer Research Trust has developed a Symptoms Flashcard which can be downloaded and taken to the GP if you are experiencing these symptoms.
Lee hopes that with education, hopefully more people will get identified sooner reducing the risk of the cancer progressing. “I think better education on the symptoms of bone cancer is so important. It’s not just the physical side of cancer, but the months and months of being in pain with no answers really affects you mentally, and puts so much stress on you. Hopefully with better education fewer people will have those experiences and receive a diagnosis earlier.”
To find out more about the different types of bone cancers, visit Birmingham Sarcoma Service – World class sarcoma care in the West Midlands
