Category: crbf

In June of 2020 I noticed a very hard lump in my biceps area. I ignored it as I go to the gym regularly. My best friend Drew is a representative level athlete and knew it was not a sporting injury. He pushed me to call my mum. She made me immediately go to the GP.

The GP was very good and organised an immediate scan and ultrasound for the very next morning. That was a very stressful time for me. I was relieved to find out it was not Osteosarcoma or Fibrosarcoma like they were concerned about. It was put down to a muscle tear. My mother was not convinced and requested an urgent MRI the next day. The result came back as a rare 3 in a million desmoid tumour. It was very confusing. I was told I needed systemic chemotherapy and had to be seen by a Sarcoma Specialist yet it was not normal cancer. Rather a chronic sub form of sarcoma.

The sarcoma surgical team at Chris O’Brien Lifehouse were excellent. They fast tracked everything to be safe and knew not to remove the desmoid as can trigger its return with a vengeance. The necessary surgical biopsy however triggered it. Sometimes desmoids can turn off so a wait and see approach can be useful at times. It was clear mine was growing however and luckily my mother was doing extra MRIs.

Desmoids behave like sarcoma in every way apart from they rarely metastasise. They are locally aggressive and grow like a vine eating everything in their way . As they are aggressive when in the head, neck or intra abdominal areas they can be deadly. They often do not respond to chemotherapy or radiation. Just like other forms of sarcoma.

I did not want to face amputation or a lifetime on and off chemotherapy. Radiation was also being repeatedly suggested despite globally being the last treatment option due to the medium term risks of a deadly radiation induced sarcoma. I was determined to find another way as was my mother, and we were not OK with the suggested further wait and see approach when it was clearly growing.

Luckily we found out about an Israeli trial by Dr Eldad Elkanave via the wonderful support of the DTRF in America, and we switched teams. I felt a sense of relief I cannot adequately describe once I changed. Interventional Radiologist Dr Glen Schlaphoff from Spectrum Imaging/Director of Liverpool Hospital Interventional Radiology and Dr Antoinette Anazodo from Prince of Wales Children’s Hospital changed my life. They gave me hope. They both have the most outstanding patient centred approach alongside incredible medical knowledge and skill-sets in their fields. They backed my wish to have TACE (chemo-embolisation) followed by cryoablation.

I have had five procedures to date. My tumour had grown from 5cm by 2cm by 3cm to 15cm by 9cm by 10cm before treatment started in February 2021 under my new team. Dr Elkanave was involved from Israel which I will not forget. It is now back down to 5cm by 2cm by 2cm. I am the first patient in Australia to do this and first globally to do this first line treatment  for my tumour type. It has allowed me to get on with life in between treatments without the harsh cardiac, fertility, mental health and immune related side effects on systemic chemotherapy.

I would not have completed my HSC or now be at University likely without my parents, Glen and Antoinette’s determination to help change the trajectory of desmoid patient treatment outcomes. Antoniette attended every appointment – even regular check ups with my lovely burns nurse Alison. Their Oncology nurses Fiona and Cathy are the best too. Glen is my hero for the rest of my life!  There may not be a lot of fancy advertising but Prince of Wales Hospital walks the talk when it comes to comprehensive Oncology care for their adolescent patients. Many others with my tumour type are now choosing the TACE and Cryoablation treatment pathway where feasible globally which makes me so happy. I would like to work with stakeholders to see Cryoablation covered by private health funds like it is in the USA and Europe.

Lastly, I know my medical journey is not over. A desmoid tumour diagnosis is a chronic condition. One must have a warrior attitude. The reality is I have many battles ahead to win the war. It is so confronting to sit next to other patients with more deadly forms of sarcoma knowing what that prognosis means. Cooper was the same age as me when diagnosed. His tumour was in the same location.

It is just not OK that Osteosarcoma and Ewing’s Sarcoma have not seen improvements in 40 years. I will help in any way to change this.  Any progress with one form of sarcoma helps another form. For Cooper, for every patient I sit next to on my check up days, for all the rare desmoid patients, and future sarcoma patients I wish for nothing short of a cure ASAP and better support while we achieve that.

I want all patients to have doctors that are patient centred, have sound consultation skills, are determined by nature, and up to date with the latest clinical knowledge. Explaining ALL options available and involving patients in decision making is also key. I want patients who do not have parents who are skilled researchers to have somewhere to turn to in Australia. Be it private or public ALWAYS seek a second or third opinion if concerned and look into trials.

Always remember what extreme talent we have in our Teaching Hospitals! –  Christopher Sabahi 2022

“I believe a real-life superhero is someone who has extraordinary or superhuman abilities or skills. They are people who deserve our gratitude.

During my cancer journey I could name a few, however right at the top of this list is my oncologist Professor Stewart Kellie, the best of the best in my eyes.

After being diagnosed on my 12^th birthday with high grade metastatic osteoblastic osteosarcoma, I thank the universe every day for Prof Kellie being assigned to me.

He told me that over the next few months things were going to be tough, I would lose most of the bone in my leg and would have to undergo many rounds of chemotherapy to beat this disease (no different to anyone fighting this hideous disease). But he also promised me that he would always tell me the truth, he would never lie to me no matter how hard his news was. That I had to trust him always and we would get through it all together.

He kept his promise to me, he made me feel so safe and protected and I knew he had my back.

I had a lot of time to think about things while being treated. How dedicated the doctors and nurses were, wondered what their families were like, and how hard Prof Kellie must have worked to become the amazing man he was. I was grateful for him from the beginning.

After many operations and many months of chemotherapy it was also Prof Kellie who delivered the news to me that I was cancer free and I was able to go back home to my hometown, some 300km from the Sydney Children’s Hospital at Westmead.

When Prof broke this news to me, you can imagine the relief for me and those around me. In our last appointment before we left that day Prof said to me “Molly, any more questions before you go?”. I said “Yes Prof I have one. You are one of my real-life superheroes, and I’ve always wondered what superheroes eat. Prof what did you have for dinner last night?”.

We laughed, he answered my question, and I was lucky enough to go home shortly after.

When I relapsed more recently it was again my superhero Prof Kellie that delivered the news after a routine scan. I knew it upset him too, but he again had the ball rolling and I knew I was in the hands of the best.

After my surgery, where they removed the sarcoma nodules from my lung, one of the first people by my bedside on the ward was Prof Kellie.

When I spotted him I burst into tears. Prof said “I’m glad I don’t have this effect on all my patients Molly” before my Mum said “Moll why are you crying, Prof doesn’t make you sad does he?”. I responded with “No he doesn’t. He makes me feel safe and I’m so glad to see him”.

And that why he is my superhero – he is extraordinary, he is so skilful and super, super clever. Regardless of the news he has had to tell me, he has always made me feel safe and he deserves my gratitude.

So, Professor Kellie, this superheroes week for 2022, I hereby rename you – Superhero Professor Stewart Kellie.

You are my real-life superhero and I salute you. Today, always, and forever.” Molly Croft