Stomach cancer can have a devastating impact on families. Below are the personal stories of three women – Gill Worden, Nadia De Guiseppe and Trine K Simpson – who have lost loved ones to stomach cancer. We are very grateful to each of these women, not only for sharing their stories but also for their efforts in raising awareness and much needed funds to support new research in to better treatments for those diagnosed with Stomach Cancer in the future.
In Australia 5-year survival rates for Stomach Cancer have improved over the past few decades however still remain below 30%. Over 2000 people are diagnosed in Australia every year – of which only 1 in 3 will survive. We are committed to changing these statistics and improving the outcomes for this devastating disease.
Gill Worden: Giving back to cancer research
When Gill Worden saw that the GI Cancer Institute was looking for people to join its Consumer Advisory Panel in 2017, she almost didn’t send in an application.
“I was very unsure about whether I was ready to do it or not,” she says. Her husband had passed away from stomach cancer in 2013, and it was hard to know if she was prepared to take on a role on the CAP. Despite her reservations, she also felt that it was important to potentially make a difference for other people affected by cancer.
“I felt like I had something to contribute,” she says. “Giving back to the people who were doing the research, doing the hard yards for people like my husband. I felt like potentially if I could make a difference for somebody else then it would be worth it.”
The GI Cancer Institute’s Consumer Advisory Panel is made up of people who have an informed consumer perspective on GI cancer. They are responsible for consulting with medical professionals on the Scientific Advisory Committee and the Working Parties. They ensure that all the information given to consumers about clinical trials is easy to understand and includes everything consumers want to know.
“It’s finding that balance between giving enough information so that people are informed if they’re going to participate in a clinical trial or if they have participated,” she says. She notes that it is also important to keep in mind that “if it’s too lengthy or it becomes overwhelming, people just stop reading.”
For people who may be considering joining a clinical trial, or have already participated in one, having access to clear and relevant information about the nature of the trial is incredibly important. As a Consumer Advisory Panel member, Gill attends AGITG conferences and attends meetings to stay up to date on the latest developments in GI cancer research.
“When you go to the conferences, and you hear about the trials, you realise that they’re advancing all the time in their knowledge, and it’s exciting to be a part of that,” says Gill. Clinical trials are an integral part of the development of new treatments that can lead to better survival rates for cancer patients.
“The more people who participate in clinical trials, the better the research,” says Gill. “The better the research, the better the outcomes for people in the future. I see our role on the CAP as helping to facilitate that process of people participating in clinical trials which is so important to improving research.”
“It was just a shock,” says Nadia. “He was a healthy man, he was happy, he was full of life.”
Stomach cancer often does not show symptoms until it is too late, and this was the case for Nadia’s father.
The diagnosis completely changed her life. She had been living in Sydney, but moved to Brisbane to care for her father and support the family while he went through treatment. She put her career as a project manager on hold.
Nadia’s father began treatment – he underwent chemotherapy and took part in a clinical trial.
“He managed to live another year from when he was diagnosed to when he passed away,” she says. “In his case, the cancer had metastised, it was a large tumour.”
Now, Nadia is working to give something back. She joined the GI Cancer Institute’s Gutsy Challenge in 2018, walking all 60km of Tasmania’s Overland Track to raise awareness and much-needed funds for research into gastro-intestinal cancers like stomach cancer.
“I want to help if there’s any way of trying to find something where people do have a chance with this cancer, or more of a chance to try to stop it. That’s my thing, I don’t want other people to go through it,” she says.
Through her fundraising, she raised awareness of gastro-intestinal (GI) cancers like stomach cancer, which have far lower survival rates than other cancers. Only 28% of stomach cancer patients survive for five years past their initial diagnosis, compared to 90% for breast cancer and 92% for prostate cancer.
“If we have that help and support we could make a difference,” she says. “We’re not going to get there without that awareness or funding. That’s why I’m doing it.”
Highlighting Stomach Cancer with the Silly Hat for Matt Challenge
In 2018 Trine Simpson and her friends, set up the Silly Hat for Matt Gutsy Challenge to honour Trine’s husband Matt and highlight the need for more research in to stomach cancer, which affects over 2,300 Australians every year – of which only 655 will survive beyond 5 years.
Matt was diagnosed with linitis plastica, a rare form of stomach cancer, in October 2012 and passed away in November 2013 aged just 40 years old, leaving behind a young family.
“I will never be able to have an answer for our boys when they ask me why their dad got sick and why he could not be cured. Why it had to be him? But I’m hoping that in some way, what we are all doing here will help others in the future to not have to answer those same questions about their loved ones because of the availability of far better treatment options.” says Trine.
“And despite the very sad reason why we are doing this challenge, it is also wonderful to do this in Matt‘s memory, and to be able to share stories and to remember a man who was always there for everyone and who always brought people together making sure they had a good time. Even in his glaring absence, he’s still managing to do exactly that.”
During 2018 over $22,000 was raised towards Stomach Cancer Research here in Australia thanks to the collective effort of Trine, her sons and friends located right around Australia.
What is Linitis Plastica?
Linitis plastica is a type of stomach adenocarcinoma. Adenocarcioma is the most common form of stomach cancer. Because linitus plastica is rare there is very little information about it. Linitis plastica spreads to the muscles of the stomach wall and makes it thicker and more rigid. This means that the stomach can’t hold as much and doesn’t stretch or move as it should when food is digested. This stiff walled stomach is sometimes called a leather bottle stomach.
As a rare cancer, Linitis Plastica has such poor early diagnosis and treatment options that only 8% survive after 5 years. The average survival rate after diagnosis is months, not years. This is a cancer that has no identified cause, no genetic testing available and treatment options are limited.