Sarcoma does not have a face, until that face is someone you love…

March 3, 2018

“My dream is for urgent and much needed change to assist sarcoma patients globally. The inception of my Foundation was and is, for the purpose of instigating this change, and to use my significant sporting affiliations, and my passion for journalism to raise grass level awareness, thus stimulating critical funding.

Put simply, my role now is to be the face of the Cooper Rice-Brading Foundation, and the human face of sarcoma, and to ensure my story is told.  No matter how difficult my journey,  I need to convey to others the personal side of this diagnosis, and the need for the critical change required to significantly alter the trajectory for  sarcoma patients everywhere.”

(Cooper Rice-Brading – June 12, 2017.)

 

Friday the 26th February, 2016, marked a very dark day in our lives.  It was the day Cooper underwent a routine MRI to diagnose a suspected tear in his bicep, and after two hours wedged in an MRI machine, anxious, alone and bewildered at the time the process was taking, he was to eventually find his life had irreversibly changed.  A routine MRI had become what was to be a death sentence for our precious son and brother.

Osteosarcoma is an insidious cancer by any standards, and is now classed with other sarcomas, among those childhood/young adult cancers with the worst survival outcomes.  Despite this, it has by and large, been overlooked, and there is statistical evidence to suggest diagnoses are rising, with a  documented 40% increase from the previous decade. (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.)

It is then perplexing to say the least, this cancer has not received the attention it so desperately needs, together with funding that has been missing from the Australian Government cancer budget.  Instead, philanthropy is responsible for the vast majority of  funding, and most often comes from the loved ones and their friends, of those children and young adults who have tragically lost their lives.

Sarcomas are part of the rare or less common cancer collective which are responsible for the deaths of 25,000 people per year in Australia.  These figures account for half of all cancer deaths, and many of these patients did not have access to treatment options simply because their cancers were rare.  Approximately one third of cancer diagnoses are rare or less common cancers, consequently a key recommendation of Rare Cancers Australia, is for a third of government research spending in cancer be directed to rare or less common cancers.  (Rare Cancers Australia, Rare Solutions A Time to Act 2017).

On average, seventeen life years per patient are lost due to sarcomas which is an impact three times greater than bowel, lung or breast cancer.  The cost to the community through the health system of bone and connective tissue tumours was $29,593 in 2003, (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.), more than three times that of colorectal and breast cancer combined, and yet there has been no marked improvement in life expectancy, nor treatment options. Current figures are not available, and in all likelihood would show a marked upward trend since 2003.

The needless loss of life, the sheer emotional hell experienced by patients, and the lack of mainstream treatment options, which may accompany a sarcoma diagnosis, are no longer acceptable, and never were.

Cooper’s face, ‘the human face of sarcoma,’  in videos, photos, documentaries and interviews  is a constant reminder of  the work we continue to do in his absences, and why as his family, we continue to do it…

 

 

9 thoughts on “Sarcoma does not have a face, until that face is someone you love…

    1. Please go ahead. The more people who understand this cancer, and the more grass roots awareness we can create, the greater the hope is for change. Thanks so much for your interest. Best wishes Tania

    2. Please do. It would be our pleasure to have you share… Thanks so much for checking – Best wishes from all at CRBF

    1. Thank you so very much for your lovely comment. It is special because it has come to be because of our son, who did so much for others with this cancer in his short life. We thank you sincerely for taking the time to write.

  1. Hi there, I do think your website could possibly be having browser compatibility problems. When I take a look at your website in Safari, it looks fine but when opening in Internet Explorer, it’s got some overlapping issues. I just wanted to give you a quick heads up! Aside from that, fantastic website!

    1. Thanks so much for the feedback. I am the most non-technical person and I will have to send your very useful feedback off to our technical expert. I thank you so much for taking the time to let me know, and I will try to have this issue fixed immediately. Best wishes from all at CRBF

    1. Thank you so much for taking the time to post. We have a lot more to come on sarcoma, and hopefully you will find it informative. If you require anything specific, please let us know, and we are happy to assist. Best wishes from all at CRBF

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