Amy Hennessey was just 21 years old when doctors at Mater Private Hospital Brisbane discovered a "giant" tumour in her pelvis.
The tumour was diagnosed as Ewing sarcoma, a rare cancer of the bones and surrounding soft tissues that most commonly occurs in children and young adults.
The diagnosis was the beginning of a courageous 21-year fight against cancer that Ms Hennessey hopes to have finally won after surgeons removed her cancerous bladder and replaced it with a "neobladder" constructed from her bowel tissue.
The remarkable surgery was only the latest in a long list of procedures Mrs Hennessey has endured since her first major operation in 2003.
That was when a team of Mater surgeons removed the large tumour from Mrs Hennessey's sacrum and pelvis in a "marathon" operation – which ultimately saved her life.
Ewing tumours account for about one per cent of all childhood cancers, affecting about one in a million individuals. Treatment involves a combination of chemotherapy, surgery, and radiotherapy.
Mater Private Hospital Brisbane urologist Dr David Winkle was among the large team involved in Mrs Hennessey's first 2003 operation.
He said Mrs Hennessey developed a recurrence of her Ewing sarcoma in 2007 and required further surgery.
"She also required many rounds of chemotherapy and a bone marrow transplant to clear micrometastatic disease - small numbers of cancer cells that spread to other parts of the body - from her bone marrow."
In 2020, scans revealed Ms Hennessey had also developed bladder cancer.
Dr Winkle said it was not uncommon for young people with Ewing sarcoma to develop secondary tumours.
Mrs Hennessey's bladder was removed by Mater urologist Dr Roger Watson and Dr Winkle reconstructed a bladder, known as a neobladder, in a six-hour operation.
The neobladder was created using her bowel tissue so that Mrs Hennessey did not need to wear a urostomy bag to collect urine.
"Although the neobladder has functioned very well for Amy, unfortunately her left kidney has been plagued by recurring infections and she required the kidney to be removed in October," Dr Winkle said.
The 42-year-old former primary school teacher and her husband Chris Hennessey, from Yeerongpilly in Brisbane's south, are sharing their story to create awareness about rare cancers.
"Many people get cancer once; I have had it three times. I am lucky I have had incredible medical support," Mrs Hennessey said.
Mrs Hennessey said her reconstructed bladder had given her more confidence to leave the house and do everyday activities she once found difficult to do.
She said Dr Winkle "changed her life" by building the neobladder.
"I went from being severely incontinent to no longer having to run to the toilet every hour," she said.
Mrs Hennessey said she never wanted to be known as 'Amy who had cancer'.
"There's so much more to me than my medical history," she said.
"I just want to be Amy. I want to be known for being an excellent teacher and for being a fun and vibrant person but time has taught me that my story can both help and inspire others, so I'm very happy to share it as a cancer story with a positive ending."
Mr Hennessey, owner of The Outdoor Club Graceville, an outdoor fitness club, said he has had to "prepare for the worst" on many occasions his wife has been admitted to hospital.
"I am in awe of the courage and resilience that Amy has displayed throughout the past 16 years of our marriage," Mr Hennessey said.
"Amy has had more surgeries, setbacks and tough times than most people would face in three lifetimes, yet she consistently remains positive about life.
"She is the most amazing person I know, and I am lucky enough to call her my wife."
From March 14-23, Mr Hennessey will be riding from Hobart to Adelaide as part of the Tour de Cure – on a mission to help find a cure for cancer and raise awareness for cancer research.
The Brisbane personal trainer has already raised more than $31,000 from members of his local community.
"I am doing this in support of two beautiful women in my life who have been impacted by cancer, my courageous wife Amy and my amazing sister Belinda, who also has cancer," Mr Hennessey said.
