In short:
Jacqui Cooper says she views her life differently after being struck down by a sarcoma.
The sarcoma community’s peak body says there is not enough research funding for this rare cancer.
What’s next?
Sarcoma Awareness Month will wrap up at the end of July.
One summer’s day Jacqui Cooper discovered a cancerous lump on her foot that would rob her of the ability to walk, work, and look after her two-year-old son.
In 2022 the then-36-year-old was diagnosed with a rare form of sarcoma, a malignant tumour that ordinarily develops in children and adolescents.
The Brisbane mother was told that if she had not noticed it so early it could have rapidly spread to her chest and lungs and killed her.
She said it was “lucky” that it appeared on her foot, otherwise it could have remained undetected until it was too late.
The human resources coordinator went through six rounds of chemotherapy, which left her weak, nauseous, bald, and bedridden for months on end.
She said her son, Max, could not understand what was happening to his mother.
“I was here every day, and then when I went to hospital he kept asking: ‘Where’s Mummy? Where’s Mummy gone?'” Ms Cooper said.
“He was quite upset at the time and I think it will stick with him.”
The Greenslopes woman previously enjoyed yoga, Pilates, and long walks, but for many months she could do nothing but lie exhausted in bed.
Instead Ms Cooper would spend a lot of time thinking about her life, and what she still wanted to do and experience while she was still alive.
While in bed she dreamed of all the places she’d like to travel to, and all the goals that she had yet to achieve.
“Sometimes you’re so stagnant in the day-to-day when you get cancer that when you come out the other side it makes things appear so differently,” Ms Cooper said.
“You put your life in the doctors’ and specialists’ hands because you want to live. I want to live for myself, my family, my son, my friends.”
She went into remission and she has remained cancer-free for the last year and a half.
Ms Cooper has been seeing a physiotherapist to regain her strength, and a psychologist to help her transition back to a normal life.
She is now back to working and walking, and can once again look after now four-year-old Max.
Ms Cooper is still recovering, but she said she was grateful that her sarcoma was caught early so she could continue living the rest of her life.
A lucky escape
The director of oncology at the Queensland Children’s Hospital and clinical director of the Ian Frazer Centre for Children’s Immunotherapy Research, Wayne Nicholls, said Ms Cooper was one of the lucky ones.
He said rare cancers, such as sarcomas, often went undetected by patients and doctors until they metastasised throughout the body.
Dr Nicholls said sarcomas could manifest in strange and unpredictable ways and often did not behave like they did in medical textbooks.
He said much more research was required in the field of sarcoma.
“On average, taking into account all factors, a long time to diagnosis is associated with a more distant spread of disease,” Dr Nicholls said.
“They can occur at any age and they don’t follow the textbook.”
He said sarcomas sometimes manifested as a non-specific pain that was often misdiagnosed as a regular sporting injury.
The forgotten cancer
Australian and New Zealand Sarcoma Association chief executive Denise Caruso said more research was vital to improve survival rates for this rare cancer.
The charitable peak body has conducted more than 30 studies and clinical trials on sarcoma patients to evaluate how sarcoma patients responded to different treatments.
“We still need visibility and funds to ensure that sarcoma is not passed over in the cancer research funding space,” Dr Caruso said.
“As sarcoma tumours can arise anywhere in the body at any age and are so varied, it is a challenge to receive the targeted funding needed to make further research possible.”
Dr Caruso said sarcomas made up just 1 per cent of adult cancers but 20 per cent of childhood cancers in Australia.
She said sarcomas were the leading cause of cancer death in children and young adults nationwide.
The organisation is fundraising throughout the duration of July for Sarcoma Awareness Month.
Medical oncologist and researcher Vivek Bhadri said the more focus sarcoma received, the better the outcomes for those diagnosed with it.
“Sarcoma is often referred to as the forgotten cancer due to its rarity yet that is more reason for increased awareness and research into the disease,” Dr Bhadri said.
“Ewing sarcoma commonly presents as non-specific pain in a bone or joint, therefore it is not uncommon to see Ewing sarcoma initially misdiagnosed as a sporting injury or growing pains with the lack of awareness of this type of cancer only increasing the risk of misdiagnosis in the initial stages.”
Get local news, stories, community events, recipes and more each fortnight.
