September is Childhood Cancer Awareness Month.
The Current situation at a glance.
Over 950 children and adolescents will be diagnosed with cancer each year in Australia.
One in five of these childhood cancers will be a sarcoma.
Each week, three children adolescents will die from cnacer.
Tow in five sarcoma patients will die from their disease. This increases if the cancer has spread upon diagnosis.
Childhood cancer survivors have a much higher risk of developing other malignancies later in life.
One in five sarcoma survivors will go on to develop a subsequent cancer or another sarcoma within ten years.
This month we shine the spotlight on the outstanding work of all cancer researchers, clinicians, dedicated nursing staff, treating hospitals and not for profits, whose focus is finding a cure through innovative clinical studies, improved standards of treatment and care, and funding research for childhood cancer.
It is also a time when we remember those children undergoing treatment, those yet to be diagnosed, and those who have tragically lost their lives to cancer in this country.
Sarcoma affects all ages, however it hits our young disproportionately hard.
As a dedicated sarcoma organisation, we wish to specifically highlight the outstanding work of Dr Emmy Fleuren, Senior Scientist, Zero Childhood Cancer Personalised Medicine Programme, Children’s Cancer Institute, whose research surrounding sarcoma specific high level tumour analysis stands to revolutionise the way we approach treatment for sarcoma in the future. Dr Fleuren joins her esteemed colleagues at the CCIA working tirelessly to advance a cure for all childhood cancers.
To hear more about Dr Fleuren’s remarkable Phosphoproteomics programme in our recent Let’s Talk About Sarcoma podcast series, click the link below.
We extend our heartfelt gratitude to all contributors working toward a cure for all childhood cancers.
Vale Professor Martin Tattersall
Today we mark the passing of a man so very special to many cancer patients over many decades. A man who would take all the time in the world to spend with his patients, allaying fears, providing hope and comfort, while engaging his special brand of patient interaction and profound kindness. Professor Martin Tattersall, or ‘Prof’ as he was known to many.
Following Prof’s time at Cambridge and the University College Hospital, he completed physician and research training at the Royal Postgraduate Medical School, The Institute of Cancer Research, and Harvard Medical School. Possibly what isn’t as commonly known, was his passion for rowing culminated in his participation and subsequent win in the prestigious Head of the River, representing Cambridge University.
Throughout his stellar career, he was Professor of Cancer Medicine at the University of Sydney from 1977, the youngest person to take this prestigious position at the age of 36, and a clinical academic at Royal Prince Alfred Hospital. His published works spoke for themselves, with over 600 academic peer reviewed articles, and 23,000 citations.
However Prof’s legacy lies with not only his relentless pursuit of a cure for cancer, but the personal interaction with his patients.
Cooper’s first meeting with Prof Tattersall could have gone either way. Coop was a headstrong, sport mad young man who had just turned 17, and Prof was in his 70’s, and a highly accomplished oncologist. As it turned out it was a match made in heaven. We understood Coop had the best of the best medically, however what we did not know at the time, is the man entrusted with Cooper’s treatment, was also renowned for the way he interacted with his patients.
The lynchpin as it turned out was Prof’s inherent love of rowing. He was not only a distinguished physician, but a passionate and very accomplished athlete. The two would share many stories over the 18 months spanning Cooper’s treatment.
Cooper and Prof forged a very close relationship, and that relationship became one of the driving forces for the inception of CRBF. Cooper could always rely on his team led by Prof, together with Keith Cox, OAM, and Dr Richard Boyle. His questions were relentless and the information they each provided was the only information we would refer to throughout the gruelling treatment regimes. It was no surprise the three comprised the first appointments to the CRBF Medical Advisory Board, together with recent member Professor Angela Hong.
Prof was also a champion of patient’s rights. He fought tirelessly to have Cooper included on a clinical study in which he felt the science demonstrated, showed enormous validity. At that stage Cooper had exhausted all mainstream options, with little hope. Despite the fact Prof was forced to swim against the tide with pushback from so many areas, including government agencies and treating hospitals, he managed to have the trial approved on compassionate grounds, which finally gave Cooper the hope he so needed. Sadly, due to the red tape involved, too much time lapsed and Cooper’s condition was too advanced by the time the trial had been approved. At times, this aspect of Prof’s work proved to be frustrating and heartbreaking. At his very essence, he was a deeply compassionate man who genuinely cared for his patients.
The world today is poorer for Professor Tattersall’s passing.
From all at CRBF, we extend our deepest condolences to Sue, Peter, Mark and Stephen, and their extended families for their devastating loss.
Georgie Katsanevkais. Redefining courage in the face of adversity…
At CRBF we have the privilege of working with remarkable individuals every day of the week.
A plethora of adjectives fall short of accurately describing the sarcoma patients we work for. Inspirational, remarkable, resilient, outstanding, courageous. Each of these words go some way toward describing those we know who are living with a sarcoma diagnosis.
Georgie Kats is one such young woman. This young Advertising Director’s story not only resonates deeply, it serves as a stark reminder when we face adversity in life, it is up to us as to the extent that adversity defines us. For Georgie, that choice was clear, it was to embrace the hand of cards she has been dealt. In her own words “I’m choosing to live a happy and fulfilled life. It may not be exactly how I imagined it to be. But I am happy and grateful to just be living each day. Perspective is a beautiful thing.”
I remember reading about Georgie. I reread the article (link below) over and over. I felt an overwhelming sense of sadness and angst – not from her words, but from what she has been forced to endure, at what arguably should have been one of the happiest times of her life. The family photos of Georgie, her husband Chris, and her precious daughter Antonia, resonated so deeply with me, as I expect they did with everyone who read this article.
Amidst the horror of a sarcoma diagnosis was a love story. The love between two young people, and the unconditional love for their newborn daughter.
An unremarkable bump on Georgie’s foot appeared toward the end of the pregnancy. Listening to sage advice from her mum, she did the right thing, and immediately brought it to the attention of her gynaecologist who felt it was nothing more than a cyst which could be addressed post pregnancy. The cyst however continued to grow, after the birth of Antonia, Georgie sought advice from her GP, who concurred it was most likely a cyst, and referred her to an orthopaedic specialist, who also felt the lump, which was now significant in size, was in fact a cyst.
It was not until the cyst began to interfere with Georgie’s favourite shoes, she decided to have it removed. It was once this procedure began, the clinician realised he was dealing with something sinister, and arranged a battery of tests and scans. A localized Myxoid Liposarcoma was diagnosed.
28 sessions of radiation began, followed by surgery, which resulted in partial limb amputation to enable life saving radical margins, and a very promising prognosis.
You couldn’t blame Georgie if she felt bitter, cheated, and disillusioned after a Myxoid Liposarcoma diagnosis was confirmed months after the birth of her first child, Antonia. For those of us who have been blessed with children, we all remember the euphoria of those magical months post birth. For Georgie, and her partner Chris however, it was bittersweet rollercoaster, as the challenges and reality of a sarcoma diagnosis were realised.
Georgie, and Chris have become the poster couple for positivity, and love conquering all.
Georgie has become a great advocate for our younger patients, sensibly educating others through social media, encouraging young people to take charge of their bodies –“ I want young adults to take control of their health. We have to grow up and learn to notice if something changes and doesn’t feel or look right. Educate yourself and be proactive with your health. Because at the end of the day none of us are invincible and we are never too young.”
The takeaways from this story are endless. Three separate clinican’s visits all with the same outcome. Georgie’s persistence arguably saved her life. She personifies the issues that are all too common. Sarcomas are rare cancers, they are sinister, and they are often misdiagnosed. Valuable time can often be wasted until the correct diagnosis is made. It is so very important to know your own body, and if a lump or bump appears without reason, and it does not go away, it needs to be checked by a physician.
If you are not happy with management of an unexplained lump or bump, it is your right to seek a second opinion. You are your own best advocate.
The final word in this article however, should be left to Georgie.
“When I lost my leg to cancer. I had no idea what to expect. As they were wheeling me into surgery in early May 2020, I just cried the whole way into the operating room. Even when they were putting me to sleep I remember tears were streaming down my cheeks. The sadness was overwhelming.
After the surgery was an adjustment. Especially during the first few days when I would forget I only had one foot and would fall straight on my behind. Then a week or so later I found myself smiling and I remember thinking to myself, you just got your leg chopped off why are you smiling. But then I thought. Why shouldn’t I smile? It’s a privilege to do so. It’s a privilege to still be alive.
I don’t know what my future holds. But I don’t feel disabled. I feel alive. I feel strong. I feel capable.“
We wish Georgie, Chris and Antonia all the wonderful things life has in store…
Follow Georgie on Instagram @Georgie_Kats
Press the link below to hear the full version of the 2GB interview with Ben Fordham and Wippa, who shine the spotlight on sarcoma, and the Let’s Talk Sarcoma podcast series.
Cancer Nurses Society of Australia are conducting a series of webinars for Adolescents and young adults living with cancer.
Tuesday 11 August: An introduction to cancer in the AYA population
Tuesday 8 September: Special considerations when working with AYAs with cancer
Tuesday 6 October: Discussing fertility, sexual health and other sensitive topics with AYAs with cancer. To register for these webinars, press the link below:
Perth based sarcoma not for profit, Sock it to Sarcoma has recently completed the fourth highly successful year of their “Shine a light” on sarcoma light show.
June 29 to July 5, marked Sarcoma Awareness Week in Western Australia, and specially chosen landmarks around the metropolitan areas and regional centres of WA landmarks were used to Shine a Light On Sarcoma. – by lighting up in the colours of Sock it to sarcoma (SITS!).
WA Sarcoma Awareness week each year sees Sock it to sarcoma! create a lasting community awareness for this sinister cancer, with this spectacular light show, and in doing so, potentially saving lives.
To learn more about the outstanding work being done by SITS! please visit their website at https://www.sockittosarcoma.org.au/
We are live!
Earlier this week, the CRBF #sarcomafootprint digital billboards launched at multiple sites in Brisbane, Melbourne, Gold Coast, and Sydney!
We have taken our awareness campaign, during the heart of sarcoma awareness month, to the streets of key Australian cities, thanks to the generosity of @QMS_media who donated this campaign in loving memory of Daniel Allchin, who lost his life to sarcoma in 2018.
We extend our gratitude to the remarkable team at QMS media, the wonderful Victoria Ellison, and the inspiring Allchin family, who each made this campaign possible. Also, huge thanks to Jordan Laing for putting the #sarcomafootprint campaign together, and to @jludemanncreative for designing the billboards.
Keep your eyes peeled when you’re driving around!