How Victorians' stories will help others

Monday 6 April, 2020

Cancer Council held consultations with local communities all across Victoria to get their input on the Victorian Cancer Plan.

Every four years, the Victorian Government’s Cancer Plan sets out how to save more Victorian lives and improve the experience of people affected by cancer. Thanks to people like you – those who have been personally touched by a cancer diagnosis – we’re helping to improve these cancer outcomes together.

We asked more than 600 clinicians and people affected by cancer what they would like to see the state government change in their support for patients and their loved ones. These voices and stories have informed Cancer Council’s submission to the 2020-2024 Victorian Cancer Plan, containing more than 80 recommendations on how to improve cancer outcomes in Victoria.

They’ve also helped highlight 10 urgent actions to improve Victoria’s cancer care. The aim? Improving cancer outcomes for all Victorians by providing the best cancer treatment and care, with the hope of saving 10,000 lives by 2025.

A priority: equitable access to treatment

Among Cancer Council’s priorities for urgent action is ensuring there is equitable access to treatment and supportive cancer care for all Victorians – a problem Jill understands all too well.

Jill lost her son, Jake, to pancreatic cancer when he was just 35 years old. Jake lived for only three months after his diagnosis in 2014.

“The lead up to his death was a nightmare,” Jill said, “with no communication between doctors and specialists.”

Jill was told Jake was too sick for radiation when she took him in for treatment to the nearest centre, 80 kilometres from their home. He passed away before his first chemotherapy appointment came around.

As her son’s sole carer, Jill was offered no support services. Optimal and timely palliative care was not provided to Jake.

“It’s not as if we were miles away from them, but we just couldn’t get it together, and it all just happened so quickly that he never actually saw them,” Jill said. “They were as frustrated as I was. It was just awful.”

This experience was so traumatic that Jill nearly refused treatment after her melanoma diagnosis.

“I was ready to refuse any medical intervention,” she said. “Fortunately, somebody talked me into it, and my experience has been totally different to his.”

Jill says her son Jake's death "should have been a lot easier".

Jill has had several melanomas removed and has received immunotherapy. She’s pleased with her own treatment, but she wishes the same quality of care had been provided to Jake.

“After what I went through with my son, I thought, ‘Why do they care about me so much?’ It was like nobody cared about him.”

Her story is just one example of the uneven spread of the cancer burden across Victoria. But thanks to Jill and others who have shared their stories, this can be improved.

Actions such as embedding standards for quality of care, improving care coordination, and improving access to services like palliative care are all part of the submission to the Victorian Cancer Plan.

The hidden costs of cancer

These actions will see more Victorians surviving a cancer diagnosis, as will easing another significant burden: the financial cost of having cancer.

When you’re diagnosed with cancer, you don’t know how much it’s going to cost. A shocking one in six people report skipping medication or delaying specialist appointments due to financial concerns.

Breast cancer survivor Jenni knows how difficult it is to make life-changing treatment decisions under extreme stress.

Breast cancer survivor, Jenni with her daughters.

After being diagnosed with cancer in both breasts on a Wednesday, she was in hospital the following Monday for surgery – and again a week later for a double mastectomy.

“All of a sudden I was on this path where I had no control and I was just in shock,” Jenni said.

Fortunately for Jenni, her career in the health insurance industry gave her both private cover and a good understanding of a complex system.

But with so many factors involved in the cost of cancer treatment, Jenni wants to use her experience and knowledge to help others.

“I have a pretty good view of what’s happening out there,” she said. “My run’s been pretty good … but it is not equal for everybody.”

Reducing the costs of cancer treatment and improving transparency in decision making are urgent actions included in Cancer Council’s submission to the Government.

Already, generous supporters are helping ease cancer’s cost burden. Cancer Council nurses responded to more than 8,500 requests for support in 2019, a third of which regarded financial and legal matters. Supporters also funded $240,000 in grants to help those experiencing financial hardship, and helped people affected by cancer find further financial resources.

Even with the amazing help of our supporters, there is still more to be done to improve cancer outcomes for all Victorians. That’s why it is so important that those affected by cancer are now also having a direct say in how to make this better future a reality.

Thank you – your help will see more people get the support and treatment they deserve, and that’s a wonderful thing.