After helping so many others raise funds for their treatment, I now find myself in the similar position.
Having lived half of my life with a rare and incurable form of cancer and fighting for equitable and affordable access for 12 years through Rare Cancers Australia, the charity Richard and I founded, I had hoped that I wouldn’t be in the situation of having to self-fund for my treatment.
But here I am.
My ongoing battle
I was first diagnosed with medullary thyroid cancer 33 years ago. The initial shock was overwhelming, as it would be for any young mother. Despite early surgeries and other treatments, my cancer has slowly progressed and spread to other organs and bones.
I live in constant and, at times, excruciating pain. My cancer is relentless and keeps moving, which has led to severe complications and has ultimately limited my treatment options.
Despite this, I remain determined to fight this disease, and the inequity for rare, with everything I have.
I look back to the day that Richard and I established the Patient Treatment Fund in 2014. To date, RCA has seen more than $5.5 million raised towards directly supporting access to a patient’s cancer treatment, and potentially saving their life.
Now, ten years on, I find myself in the ironic situation of needing to have my own PTF page and seek support for the significant out-of-pocket costs that lay ahead.
2014, Richard and Kate in the front of Parliament House, Canberra
Discovering Theranostics
As my cancer progresses, my treatment options are increasingly limited. The fact that my cancer is very rare means that no treatments are funded through either Medicare or the PBS – a story familiar to all rare cancer patients and what led Richard and I to set up RCA all those years ago.
I have tried many established therapies, and the remaining options are such that my body can simply no longer tolerate them. I am left with one final hope and that’s a form of nuclear medicine, called Theranostics. A novel treatment that simultaneously seeks and attacks cancer cells whilst leaving healthy cells untouched. After discussions with my treating clinicians and the experts delivering Theranostics in Australia, I am certain that this is my best option.
However, the cost of this life-saving treatment is significant. Terbium is the radioactive isotope that will be used. It costs between $10,000 - $13,000 per infusion. I understand I will need 4 rounds. As this treatment is not PBS funded, many of the associated costs involved are also not covered. It is only available in Brisbane, so I will need to travel and stay there for each treatment cycle. If Terbium is not successful, another isotope – Actinium, is available. The cost of it is approximately $25,000 per dose.
I believe I will need to raise around $100,000 to cover all these costs.
Financial Impact
Raising $100,000 is no small feat, and I know, having supported hundreds of others through RCA who have had to do the same.
The financial burden is immense, and the options are limited, having exhausted my savings on previous treatments. I am retired and need to access my superannuation or remortgage the family home if the money can’t be raised some other way.
Asking for help is very hard. I have counselled so many patients in the past about the injustices of our health system and why it is okay to ask but when faced with the reality myself it is immensely challenging. I am however, out of options.
Hope on the Horizon
As I said earlier – I am determined to fight this. My journey is far from over. While the road ahead is fraught with challenges, I remain hopeful and determined. The possibility of undergoing Theranostics has rekindled a spark of optimism in me.
Every donation, every word of encouragement, and every gesture of support brings me one step closer to the treatment I so desperately need. The support of the rare cancer community and the promise of new treatment options offer a beacon of hope.
I want to say thank you to everyone who has been there and continues to be there for me as I go through this very uncertain and scary time. Anything that you can donate is truly appreciated.