Andy has kindly shared his story and why awareness is so important.
The first symptom I experienced was an unexplained pain in my shin that was persisted for 6 months, I then developed a lump.
I had a biopsy taken and the sample indicated that I had chondrosarcoma. I had the tumour removed and replaced with a custom implant of the tibia and knee, with a tibial bone block.
Subsequent biopsy of the whole tumour discovered dedifferentiated osteosarcoma cells as well as the chondrosarcoma, which led to chemotherapy. While recovering from the chemotherapy, my remaining tibia started to collapse, which has resulted in revision surgery to replace the bottom section of my implant. I am currently recovering from the surgery, but so far everything is looking good and as of yet there is no sign of metastasis. I am still being monitored regularly.
The support I have received from the Sarcoma team at Oswestry has been outstanding, and the treatment at the Christie has been excellent.
Dealing with the chemotherapy has been the hardest thing I could ever imagine. I was due to complete six cycles of chemotherapy, but this was stopped after four following a neurological reaction to one of the drugs where they suspected I had had a stroke or TIA (Mini stroke). Luckily, tests and scans showed it was neither.
I am currently on long term sick leave from work. I am fortunate to have an employer who is very supportive of my situation and with a good health insurance package, meaning the financial impact has been limited. My wife has also stopped work to act as my carer.
My mobility is very limited, I am on crutches, unable to drive and at the moment I need a wheelchair if I’m leaving the house. I cannot stand to cook, and I am reliant on my wife for meals, cleaning, laundry etc. As I recover from my latest surgery, I expect to be able to walk and drive, take on my share of the housework and, ultimately, return to work.
I am grateful for the support of my wife and the knowledge that, all being well, we will be able to return to something like normal (a new normal!) in the not too distant future.
My advice to others is don't try to do it by yourself, there is support there for you, whether it is your clinical nurse specialist, the Macmillan Nurse, or the Bone Cancer Research Trust. All of them will be there for you, your partner and your family.
You will find your needs will change as you go through different stages of your treatment and recovery, do not be afraid to ask if there is someone else you can talk to.
Awareness is so important! I was lucky my sarcoma was diagnosed when it was. If it had not been, it is almost certain that my leg would have broken, releasing cancer cells into my bloodstream. If that had happened, my leg would have been amputated, and I would probably have developed metastasis. Early diagnosis improves the treatment options.
In May 2020 Andy underwent revision surgery following the fracture of his right fibula. A subsequent recurrence of the dedifferentiated chondrosarcoma in the soft tissue around his knee meant Andy had an above the knee amputation in July 2021. Towards the end of 2021 it was confirmed Andy had metastases to his lungs and was given a terminal diagnosis.
Andy was enrolled onto the ImmunoSarc trial at UCLH in March 2022. Andy remained on the trial for about six months before leaving the trial due to disease progression. At the end of 2022 Andy was started on second line chemotherapy, etoposide and ifosfamide. Sadly, Andy was only able to complete a few cycles of chemotherapy before his health deteriorated and he died on 10/04/2023.