An unsung hero of melanoma care for nearly 30 years

An unsung hero of melanoma care for nearly 30 years

22 March 2018

When Lydia Visintin began her career in nursing at the Royal Prince Alfred Hospital in 1990, life for melanoma patients was very different compared to what it is today. 

Stage IV melanoma patients on the oncology ward had little hope as the only treatment option was chemotherapy, a treatment with significant side effects that offered very little survival benefit. Interferon, a first-generation immunotherapy, was also available for patients as an adjuvant treatment, though this too had many side effects and was difficult to tolerate.

In 2006, Lydia joined what was then called the Sydney Melanoma Unit (now Melanoma Institute Australia, or MIA) as a Clinical Nurse Consultant, working out of Royal Prince Alfred Hospital and Westmead Hospital. Since then she has been at the coal face, looking after patients during what has been the most exciting time in terms of our understanding of the biology and improved treatment of melanoma.

“The nursing role back then was critical in providing support for patients who were transitioning from surgery of their melanoma to medical oncology for systemic treatment,” remembers Lydia. “My first few years in the role were very difficult as the treatment options were so limited and the results from clinical trials were not revolutionary.”

Because of the limited treatment options for patients, Lydia’s role was crucial in the management of symptoms predominantly from disease progression. Lydia provided vital support and advice in clinics and by phone for patients and their carers. In addition, she ensured patients were referred appropriately and had access to supportive health and palliative care services in the community.

“At the Cancer Centre in Westmead Hospital, an arm of MIA, we used to see 40 to 50 patients each week. We all worked hard and it was emotionally draining when patients you got to know well had poor outcomes. Many were young too,” remembers Lydia.

“There are so many patients who I remember fondly and with sadness that we were unable to do more for them. They missed out on trying new treatments that could have saved them.”

The tide finally began to turn, and Lydia witnessed some incredible results with their patients who received BRAF inhibitors as part of the Phase I clinical trials that MIA’s Professor Rick Kefford and his team were running.

“Our clinics were very busy and early on we saw some incredible results that were never seen before where melanoma lesions were reducing in size after only a few weeks of treatment,” recalls Lydia with excitement.

The new treatment was only suitable for patients with a specific gene mutation, known as a BRAF mutation, in their melanoma. Understandably, desperate patients were knocking down the doors to get tested to see if they had a chance with this new treatment.

“It was incredibly stressful as patients were very keen to be tested,” said Lydia. “They wanted results straight away; however the testing and processes was very labour intensive and patients had to wait 2 to 3 weeks before receiving results. My role was important in keeping patients up to date with the progress and providing reassurance during this anxious time.”

Then along came the second generation of immunotherapies. More clinical trials opened at MIA, this time testing CTLA-4 and PD-1 inhibitors.

“These were exciting times and never before had I seen outcomes for Stage IV patients change so much for the better,” recalls Lydia.

“My role had evolved from a predominantly palliative care role to providing support and reassurance to patients who were responding to treatment.”

Lydia provided education about treatment and how best to manage side effects, and encouraged patients to report their symptoms early. 

“When not in clinic, I spent a lot of time on the phone speaking with patients,” said Lydia. “Having someone at the end of the phone to just ask whether something is normal or not is very reassuring for patients. Without that support there would be a lot more of an emotional and physical struggle.”

“A diagnosis of cancer is a stressful time and understandably very overwhelming for patients,” said Lydia. “To help them navigate our complex healthcare system is crucial. I found it very rewarding to help patients and provide them with that support.”

After 12 years caring for melanoma patients and their families and witnessing firsthand the life-changing effects of melanoma research, Lydia has decided to step back from the clinic and is trying her hand at a new role in health facility planning.

Lydia was recently acknowledged for her years of service and dedication to melanoma patients where she was awarded the inaugural MIA Rhonda Devine Award for Supportive Care which she was presented with at The Ultimate Melanoma Masterclass.

“I feel very privileged to have worked in melanoma during the early days and be there for the major breakthroughs in treatment. It was also a real honour to work so closely with Professor Kefford and many others who have not only pioneered treatment in melanoma but also been wonderful mentors and friends.”