Murrumba Downs mum battling rare cancer-like illness seeks support

Rare Cancers Australia

Murrumba Downs local, 31-year-old Kate McKenzie has been battling a rare cancer-like illness that is characterised by the spontaneous growth of tumours in her abdomen since she was 20 years old. 

Known as Familial Adenomatous Polyposis (FAP) syndrome, it is a genetic condition that has also affected Kates mother, who lost her battle with it when Kate was just six-months-old, and now Kates seven-year old daughter, who has been confirmed to have the genetic mutation. 

It is a complicated condition that can impact people in a number of ways. For me, my FAP syndrome has meant annual endoscopies, the removal of many polyps and my small bowel, chemotherapy and radiation for the brain cancer I was diagnosed with three years ago, and the treatment of four inoperable inter-abdominal Desmoid tumours obstructing my bowel two years ago,” Kate shared. 

The tumour growth in my abdomen continues to be so extensive that I have even had multiple stents (specialised tubing) put in because tumours were obstructing my kidney function and at the start of this year, tumours were found to be obstructing veins to both my legs. During my most recent admission in January, I had another sepsis attack with four life-threatening infections which I am glad to have recovered from. However, I now must have endoscopies twice a year as my duodenum is half the size and carpeted in Desmoid tumours. It’s a long road.” 

Like Kates condition, her treatment is complex. To address the growth of her tumours, Kate has recently started on an experimental drug called Nirogacestat in the hope that it will shrink the masses. This drug is not available in Australia, but in America, and Kate is accessing this at no cost as part of a World Compassionate Access Scheme however shoulders the significant fees associated with its transport to Australia. 

While we watch and wait to see the effects of Nirogacestat, theres still a long way to go to stop the grief and damage these tumours have and continue to cause. These complications are what comes at a significant cost for me and my family,” Kate said. 

For example, while health insurance allows me to access a network of treating clinicians, medication and the monitoring of my progress through regular hospital admissions, scans

and blood tests are not covered. That is why I am fundraising with the support of Rare Cancers Australia.” 

My mum passed away from the condition we share when she was 27 years old. I feel lucky to have lived past this age and to have reached my goal of turning 30 a year ago and seeing my daughter walk through the gates on her first day of school,” Kate continued. 

My goal now is to get all my tumours back under control, hope the growths in my duodenum at least stay the same size, and my biggest focus is being there for my beautiful daughter and husband each day.” 

You can help Kate reach her goal. 

Visit the Rare Cancers Australia website to donate to Kate’s campaign to raise funds for her continuing care:

About Rare Cancers Australia 

Rare Cancers Australia (RCA) is a leading charity that works to improve the lives and health outcomes of Australian patients, carers and families affected by a rare or less common cancer diagnosis. 

We do this by: 

  • providing support to the patients, carers and families of today through practical and emotional assistance, help with clinical navigation, financial and fundraising support, and the facilitation of support groups and peer connections. 
  • driving meaningful and long-term change for the patients, carers and families of today and tomorrow through creating strong partnerships and influencing policy in order to increase survivorship rates and patient participation in decision-making at the individual and systematic levels. 

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