Below she shares her story to help others with a similar diagnosis.
It is hard to remember just how long before my diagnosis that I had been visiting the GP with symptoms. Prior to my diagnosis, I was suffering from and being treated for an irritable bowel and an irritable bladder for a few years.
This, I was later told, was because of my growing tumour pressing down on my organs.
My doctor felt my abdomen and explained that where I was feeling discomfort was in the area of the large bowel, which fitted with the symptoms of constipation and irritable bowel syndrome (IBS). I also thought that my ribs 'felt odd', but thought I had bruised them during a boot camp exercise session. I was under the impression that if ribs were bruised there was nothing that could be done other than to wait for it to heal. So, I left it.
Eventually, I developed an increasingly protruding lump to the side of my ribs, and a slight enlargement to my chest area. I mentioned the protruding lump to my doctor in previous appointments, but it was very minor at the time, and the doctor said that everyone was different on each side of their body. But, as the lump grew, I returned to the doctor a few months later. At this point, she immediately arranged for an X-ray and ultrasound. The ultrasound suggested that my spleen was enlarged, and I was told that I needed a CT scan.
On Monday 19th August 2019 at 7pm, my GP rang to tell me that the CT scan showed I had chondrosarcoma, and that I would need to be seen very quickly by one of three hospitals. I was asked which one I would like to be referred to. I had no idea which hospital to choose, so I selected University College London Hospital (UCLH) as I had vaguely heard that it was a good hospital. The doctor then told me that with this type of cancer, the 5-year survival rate was 90%.
It was only at this point that I realised I had been given a cancer diagnosis. I had no idea what chondrosarcoma was.
Trying to tell my family after the GP's phone call was very difficult because I didn't know what chondrosarcoma was. I knew it was in my ribs, so I ended up telling my family that it was in my lungs.
After a week, I chased the doctors to find out a date as I had not been contacted. They said that they could see I had been referred to the Royal National Orthopaedic Hospital (RNOH) at Stanmore. I was totally confused, why was I being sent to an orthopaedic hospital? I didn't have a spinal injury or need a hip replacement? The admin staff at the GP surgery couldn't explain why either.
A week later, I was walking round the supermarket when I missed a call from RNOH, so I called them back. One of the options was press 3 if you have cancer. Until that point, I hadn't realised that the diagnosis was primary bone cancer. My only understanding of bone cancer was secondary cancer in terminal cases.
At my first appointment at RNOH, it was explained that they could treat it. They informed me that the tumour was a slow growing tumour, and had grown to the size of 17cmx10cmx15cm, and had been pushing down on my organs causing the shortness of breath and irritation to my bowel and bladder.
The protrusion on my side was where the tumour had grown so large it had no more space to grow internally.
Surgical treatment was the only option available to me. The first operation in November 2019 was at The Royal Marsden because so many of my abdominal organs were impacted by the tumour. It involved the resection of five lower ribs on the left, which also left me with passive diaphragm on the left side and a scar 32cm long. My ribs and diaphragm were replaced with two biological meshes to protect the organs. As there are no ribs to contain my organs, there is unevenness to my body shape.
Because of the size and location of my tumour it felt like it took time to find an appropriate surgeon. I do appreciate that it was important to find the right surgeon to perform the operation, but it was difficult at the time going from consultant to consultant. Once the surgeon was agreed upon, the surgery went smoothly.
The surgeon was very kind to my family, explaining to my children what he was going to do and that he would take good care of me. He answered all of their questions and they were allowed to follow me down to theatre (obviously this was all pre-COVID), a wonderful thing to do in such a difficult situation. He also telephoned my husband straight after the operation.
Once I had the initial surgery, I had follow-up scans every six months, and for 18 months I was told that everything was fine. However, it turned out there had been several missed diagnoses, and there had in fact been metastasis to my lung which had probably been there since the operation. That was a very difficult time because it caused a breach of trust in my care.
There is a lot of fear and ignorance around cancer in general, and even more so around bone cancer.
There was pressure on me from some family members not to have surgery, even though it was the only option. The Bone Cancer Research Trust and members of the Virtual Cuppa support group helped me obtain a second opinion so that I felt I'd made an informed decision to move forward with more surgery.
I had a second operation in August 2021 and was 'seconded' out to The Royal Brompton Hospital, where the metastasis in my lungs was successfully removed. My scar was extended, so I now had a scar that runs from the middle of my chest, across the left of my chest, and up my back. It measures 51cm in total.
After my second operation, I was returned to The Royal Marsden for continued monitoring and care. They have found a nodule along the scar line of my original surgery and want to keep a close eye on it. They have no idea what the nodule is. It was not clear on the scans and could just be scar tissue. I was monitored every three months, and the nodule remained stable. In December 2022 there was a slight increase in the nodule size, so they again wanted to keep a close eye on it.
Although they wanted to change my scans from every three months to every two months, I asked for my scans to be kept three monthly. The nodule has since remained stable, and so I have asked my next scan to be six monthly. We have compromised on every four months. Hopefully, if everything is okay after the next scan, I will then ask for a six monthly follow-up.
Since my diagnosis I have made looking after myself a priority. I have been left with pain and discomfort on my right side due to it compensating for the lack of 'scaffolding' on my left side. I'm still having physiotherapy and have exercises that I will probably have to keep doing for the foreseeable future. I generally try to eat better, sleep better, and do relaxation and stress relieving activities.
I have had lymphatic drainage (thoracic lymph affected as a result of a now passive diaphragm on the left-hand side) and will have to wear compression garments for the rest of my life. I've also been referred for scar therapy.
One positive to come out of my diagnosis was that I hadn't realised how much and by whom I was loved. My husband, children and their partners have been and continue to be my source of strength. I have friends and family members who continue to encourage and support me four years on. The Bone Cancer Research Trust's Virtual Cuppa support group in particular have been incredible in offering a safe space to discuss any emotional and practical issues.
My advice to others dealing with a primary bone cancer diagnosis would be to ask questions. Don't accept everything/anything you are offered. Try to do your own research and don't let anyone rush you. It is important, if you can, to have someone who will shield you from any 'well meaning' friends and relatives. Try not to feel obligated to speak to anyone until you are ready.
It is important to raise awareness, because early diagnosis will limit the damage and disability that surgical treatment causes, and may also increase life expectancy outcomes.