Sarcoma is a rare type of cancer. Although only accounting for around 1 per cent of all cancers, it greatly impacts children and young people, accounting for up to 20 per cent of cancers in children and up to 10 per cent of cancers in young adults. It begins in the supporting tissues of the body such as fat, muscle, blood vessels, nerves, bone and cartilage and there are many different types. Often, it can be incredibly hard to treat.
This Sarcoma Awareness Month, we’re shining a light on this rare type of cancer by sharing the stories of young South Australians Stephanie and Tessa, who shared a bit about their sarcoma experience and why they are now speaking out to support others.
Tell us a bit about your diagnosis and treatment:
I was diagnosed three years ago, at the age of 30. I used to do a lot of running and one day when I was out for my run, I had a sudden onset of pain in my hip/pelvis that then didn’t go away. I was limping around for about a week before I went to my GP. I am fortunate that she recognised that my symptoms weren’t really typical for a running injury and immediately referred me for an MRI and, after further imaging and biopsies, I was diagnosed with osteosarcoma in my pelvis.
Like most cancers there is an evidenced based protocol for treatment of osteosarcomas. For me it meant starting with ten weeks of chemotherapy. During this time, I was in a wheelchair for risk of fracturing my pelvis and complicating things further. After the initial chemotherapy I had an 8-hour operation before completing another eighteen weeks of chemotherapy. During this time, I also began rehab and slowly started to walk again. Following the chemotherapy, I had a few months where we thought I was free from disease; however, I then found a small lump under my arm and scans confirmed I had metastatic disease, which was absolutely devastating. I had some palliative radiation for pain before starting on immunotherapy. I have been incredibly lucky and have had a good response to immunotherapy to date, and have now been on it for 18 months.
I was diagnosed with Chondrosarcoma in December 2015 in my shoulder, just a couple of months after my 16th birthday. I was bumped at school on my shoulder and it was quite sore for a few days afterwards. I had limited range of movement in my shoulder/arm and quite bad pain so told my mum, who noticed a large lump. I went to my GP who referred me for an ultrasound, and further scans including a biopsy and a couple of weeks later, I was diagnosed with Chondrosarcoma.
This was a huge shock for me, and it was very confronting and overwhelming to acknowledge and accept this. It was very scary and felt completely unexpected, as I had always been quite fit and healthy, and had never heard of Sarcoma. I think that any cancer diagnosis presents multiple challenges, in particular rare cancers. At the initial consultation, the GP told me that he had never seen anything like this, which I think highlights the rarity of this disease.
Chondrosarcoma doesn’t respond well to chemotherapy or radiotherapy, so my only option was surgery. I had my first surgery at the end of January 2016, and 2 surgeries in the following months due to further complications. My first reoccurrence was in November 2016 which required another surgery. My next reoccurrence was in October 2017, and latest in March 2018, both requiring surgeries to remove the tumour. Fortunately, my scans for the past 2 years now have been clear with no evidence of disease.
How are you doing now?
I am still having my immunotherapy infusion every three weeks, and have been feeling really good. I was studying medicine when I was diagnosed, and I have been able to return to my studies in the past year which I am so happy about, and I hope my experience as a patient will make me a better doctor. The physical side of things can be challenging at times, as I use a walking stick and do get fatigued, but I am very fortunate that the Orthopaedic surgeons were able to do the incredible job they did to reconstruct my pelvis and give me that opportunity.
I met Tessa at the end of 2019 through the South Australian Bone Cancer Unit at Flinders Medical Centre, and it has been so helpful to have someone to talk to who has also experienced sarcoma. Sarcoma is so rare, and the disease and treatment often leave patients with disabilities which have a big impact on life moving forward, so by publicly sharing our stories we hope to be able to help others going through a similar experience.
I’m doing really well now and have just moved from having scans every 3 months to every 6 months to continue to check that everything is ok. I’m now at university in my third year studying psychology and hope to focus on heath psychology after I’ve graduated. The mental aspect of being diagnosed with cancer continues to be challenging, as does the physical aspects. A major challenge that I have found over the last few years is adapting and accepting the limiting function of my shoulder following the invasive surgeries, as well as often experiencing quite a lot of pain. But I’m generally doing well and look forward to continuing to share my story with others.
What is your message to people currently going through a cancer diagnosis, particularly a rare cancer like yours?
My family don’t live in Adelaide so I was very lucky that they were able to come across to support me during the uncertainty of diagnosis and throughout treatment. I also have an amazing group of friends who helped me so much through my treatment, and continue to do so. Before my diagnosis, I was never good at asking for help, but my message to those currently going through cancer is that people really do want to help, all you have to do is ask and to let them help you when they offer. It’s often a simple gesture that can make a huge difference and make you feel less alone in your experience.
I was incredibly lucky to have great support from family and friends throughout my diagnosis and treatment, however I know that not everyone is that lucky. Because this type of cancer is so rare, it’s often hard for people to understand what you’re going through, so it’s important to reach out and access support and information that’s available. It is often very overwhelming, however there are so many resources and many people willing to help. Although Steph and I had different diagnoses and treatment plans, it is great to be able to talk to someone that relates to what you are going through. You don’t need to go through your diagnosis and treatment alone. Find people that you can trust and ask them for help when you need it—it really does make a huge difference.
It can often be difficult to know where to turn for information and support, especially when you are living with a rare type of cancer like sarcoma.
If you have recently been diagnosed with sarcoma, or know someone who has, we’re here to help. Our Cancer Council Nurses are available to provide information and support through Cancer Council 13 11 20. Get in touch today or visit our support page for more information on Cancer Council SA support services available.
Stephanie and Tessa are both ambassadors for the SA Sarcoma and Bone Tumour Unit, located at Flinders Medical Centre.