Flinders Foundation

“The thing about cancer is that it just keeps on giving. You’re never really free of it. I know I’ve done the hard stuff. I’ve ticked off surgery, chemotherapy, radiotherapy, more surgeries, losing my hair, feeling unwell and the mental exhaustion. I’m in remission now and believe me, I’m so grateful to be here... but there’s always going to be more.  You’re always on alert, there’s always surveillance and check-ups... and for me there’s also lymphedema. It just means I can’t ever completely move on.”

Diagnosed with breast cancer in 2020, Joanne endured multiple surgeries, including double mastectomy and removal of lymph nodes, as well as chemotherapy and radiotherapy.

While pleasingly she’s now in remission, Joanne is one of an unfortunate number of patients who go on to develop breast cancer-related lymphoedema, which occurs when lymph nodes are removed or damaged during cancer surgery or radiotherapy.

The condition causes swelling and discomfort in the arm, breast or hand, and can be painful and have wide ranging impacts on quality of life.

“It can be a strange feeling because if feels like my arm isn’t strong enough,” Joanne explains. “I often get pins and needles in my hands and when there’s lots of fluid in my arm it blows up and it’s so heavy it hurts.“I have to be really mindful of my environment and to not do too much. “If I have a shower that’s a bit too hot, or the weather is hot, if really flares up; I can’t do too much housework or bear too much weight; and I can’t wear rings or tight clothes.”

To help ease her lymphoedema symptoms, Joanne has lymphatic massage to help drain fluid build-up and wears a compression garment. But she says it can make her feel self-conscious and serves as another reminder of her cancer. “I’m grateful to be here and I know lymphoedema isn’t the worst thing out of all that I've been through,” Joanne says. “But I refer to it as that final slap in the face because it will always be there...and you just have to live with it.”

Sadly, there is no known cure for lymphoedema. But early diagnosis and treatment make it easier to manage.  To help with this, it is recommended that patients have ‘baseline’ measurements of their arm taken before surgery and treatment, and regularly afterwards to detect any changes.  This can be done using a SOZO machine which gives a precise snapshot of tissue composition and fluid build-up in the limb.

You can help bring a SOZO machine to the Breast and Endocrine Clinic at Flinders, so many of the 7,500 patients who visit the clinic each year - with either a new breast cancer diagnosis or for ongoing check-ups - can be monitored for developing breast cancer-related lymphoedema.

This will give patients affected by breast cancer the best chance of detecting lymphoedema early, so treatment can start as soon as possible to stop the condition progressing.

“Lymphoedema can occur any time after surgery, and it may even begin several years after surgery,” explains Amanda Jones, Advanced Nurse Consultant in Flinders Medical Centre’s Breast and Endocrine Clinic. “Often lymphoedema presents right at a time when people are trying to move on from their acute cancer treatment and regain their quality of life, and this can have a huge impact on their emotional wellbeing as well as their physical wellbeing. “This early detection using the SOZO machine allows treatment to begin proactively to potentially slow progression and help reduce long-term physical and functional impacts, including reducing swelling and preventing infections.”

Your fundraising for Dry July will enable Flinders Foundation to fund dietetics and physiotherapy services offered through the Cancer Wellness Centre, which is the focal point of a cancer wellness program to help ease the burden of cancer and address many of the unmet needs of patients and their families during and after cancer treatment.

The dietetics and physiotherapy services will provide practical advice and tips for patients and their families on the effective management of diet and exercise, during and after cancer treatment.

Patients at Flinders Medical Centre, and across regional and remote South Australia, are now receiving the monitoring they need to help detect liver cancer before it’s too late…thanks to Dry July!

This state-of-the art equipment provides a non-invasive way of assessing the amount of fibrosis or scarring in a liver, without the need for an invasive liver biopsy.

The amount of fibrosis is a critical risk factor for liver cancer, and by detecting liver issues earlier through a FibroScan, more treatments and enrolment in a cancer surveillance program can be initiated to give patients the best chance of a good outcome.

Professor Alan Wigg, Head of Flinders’ Hepatology and Liver Transplantation Medicine Unit, said in the few short months since the FibroScan arrived at Flinders, it had clocked up plenty of miles - travelling to outreach clinics across Aṉangu Pitjantjatjara Yankunytjatjara (the APY lands) as well as regional areas including Coober Pedy, Port Augusta and Yalata.

“The additional FibroScan has given us the flexibility to do the work we need to do – whether that be in the clinic at Flinders or in the community,” Professor Wigg said.

“We can have one based at Flinders and one travelling around which means we don’t have to put any patients on hold and everyone can get a FibroScan that day.

“With an instant electronic result, patients can either go away with the reassurance of knowing there’s no sign of significant liver disease, or we can quickly identify which patients are at a much higher risk and organise for them to have follow up testing.

“It’s also portable, and fits in carry-on luggage by only weighing 10 kilograms.”

The FibroScan is also helping many patients avoid invasive testing, including the need for an endoscopy or biopsy.

Professor Wigg was grateful to Dry July for bringing the FibroScan to Flinders, while also spreading the message about alcohol minimisation and safe consumption.

“One of the complications of liver cirrhosis is liver cancer, which is unfortunately the most rapidly rising cancer in Australia,” he said.

“It’s important that we are able to identify those patients who are at higher risk of developing this, and the FibroScan helps us to do that.”

Many face-to-face cancer wellness programs have been unable to operate during the COVID-19 pandemic to help protect vulnerable cancer patients and their families. But the generosity of the Dry July Foundation has ensured patients can still access some of these - all from the comfort and safety of their own homes.

This funding enabled the Arts in Health service at Flinders Medical Centre to create a range of online videos and resources for patients, their carers and families including meditation and relaxation to music, art therapy, creative writing, journal making and illustration, guided art making and uplifting music.

Arts in Health at FMC Manager Sally Francis says the online resources had been tailored to meet the specific needs of those experiencing cancer and are delivered by experienced artists and Arts in Health practitioners.

“The initial production of the video resources was a reflexive response to the restrictions of COVID-19, meaning patients no longer had physical access to the Cancer Wellness Centre. Prior to this, patients were enjoying creative workshops and music for relaxation in the centre itself,” Sally explained.

“Feedback gained from patients prior to the Cancer Wellness Centre closure illustrated the soothing and calming benefits of engaging in an art activity or relaxation to music.

“Writing and journaling activities also help people with cancer to reflect and tell their personal stories and art therapy offers processes for patients to process and externalise their experience through creative expression.

“The practical outcomes of these engagements mean people can feel supported and guided to learn a new skill.”

Among those to use the online videos was Pam Priadko, who was diagnosed with Lymphoma six years ago. Having undergone chemotherapy, Pam still attends regular appointments at Flinders and is involved in a local cancer support group.

“I quite liked the journaling videos as I’ve journaled in the past about my cancer journey,” Pam said.

“It’s a nice activity to do to create something just for you, and to do when you have time to stop and reflect. The videos were well done and explain how to get started in a way that’s helpful for those who may not have done it before.”

Pam is looking forward to many of the Arts in Health activities and other cancer wellness programs re-commencing in-person soon, to provide more support for those living with cancer.

“Cancer is such a shock and a real journey, and I really recognise the value in getting together with other people to talk about it, and hear how others are feeling,” Pam says.

“It’s also valuable to hear from others about how to access services, information or other tips - whether that be related to cancer or to other aspects of life, because life still goes on.”

Arts in Health online resources and activities can be accessed here 

Thanks to the outstanding efforts of Dry July 2020 participants, Flinders Foundation will be purchasing a FibroScan - vital equipment which allows a non-invasive way of assessing the amount of fibrosis or scarring in a liver, without the need for an invasive liver biopsy.

The amount of fibrosis is a critical risk factor for liver cancer – the more fibrosis, the greater the risk of cancer. By detecting liver issues earlier through a FibroScan, more immediate intervention and treatments can be initiated which will lead to better patient outcomes. 

Dry July 2020 participants support will truly be life-changing for many South Australians, including those visiting clinics at Flinders Medical Centre and in remote indigenous communities. 

Flinders Foundation would like to thank Dry Julyers for their support and contribution to making a positive difference in the lives of people affected by cancer.