When Megan was diagnosed with Adrenocortical Carcinoma (ACC), it was a shock for so many reasons

02 Mar 2023

When Megan was diagnosed with Adrenocortical Carcinoma (ACC), it was a shock for so many reasons.

“All my doctors would tell me ‘I’ve never met anyone with this cancer.’ Hearing that repeatedly when you’re scared and have so much uncertainly doesn’t give you a lot of confidence,” Megan shared.

“I quickly realised that I had to become my own advocate, a team leader in my own care and that I needed to navigate our confusing healthcare system. I would spend hours researching ACC and treatments, new clinical trials and then educating healthcare workers about this rare cancer. A role reversal I wasn’t expecting.”

Megan was a natural teacher as she spent most of her week teaching New Graduate nurses and students in her role as a Nurse Educator. This was different, this was her life.

Megan during treatment

“I used to be an anaesthetic nurse. I used to hold the hands of patients and hear their cancer stories, now it was me being the patient and I needed someone to hold my hand,” she explained.

“As health care workers, we want to fix things. But taking on a rare cancer isn’t straightforward, it’s a never-ending stream of tests, appointments, scans, and uncertainty. This cancer doesn’t have enough research or effective treatment. The statistics are grim, and you can’t just ‘fix’ it.”

Megan’s rare cancer journey started in October 2021. She was working in the height of the COVID-19 pandemic. She was extremely tired but like many other healthcare workers, thought it was from working long hours. She’d also lost 10kgs, but she assumed this came because of her recent change in healthy eating. One day she noticed that her abdomen was large, and with a friend’s assistance, visited her GP. She was then sent for an urgent CT scan which showed a large uterine fibroid but also an incidental finding of the tumour on her adrenal gland.

“On the CT scan it was very clear to see. It was so confronting,” Megan remembers.

“After my CT scan I was booked immediately to see two surgeons the following next week. In November I had a six hour surgery on the same day my son did his last HSC exam. There are no words to describe how hard this time was for everyone in my family, including my husband, children and my parents.”

Megan at work

Megan’s surgery was successful, and her tumour was removed. Although she had clear margins around her tumour, the aggressive nature of ACC and how this cancer behaves means that she will never be ‘cured’ of ACC or that she will be in ‘remission’. Megan will be forever living with this cancer and hopefully will remain - NED (No Evidence of Disease).

“Medical professionals just don’t know enough about ACC and how it behaves. Due to the rarity of the cancer and the small amount of people diagnosed each year (1-2 per million Australians), they can’t say that it will never come back, so I’m closely monitored. This cancer has no clear treatment schedule, so I take oral chemotherapy (that works for approximately 30% of people with ACC) which triggers a range of side-effects and has led to more medications. I am currently taking about 16 tablets a day, I am like a walking pharmacy,” she explains.

“The side effects and being so alone is the part of having a rare cancer that many people do not know about. It’s like a dark cloud hanging over my head. I stopped telling friends how I feel because it’s just too difficult. I have spent many times crying in the shower, in my car, going to bed before my husband to cry so that he does not see me.

“People think cancer patients all look the same. But just because I don’t look like a typical cancer patient, doesn’t mean I’m not suffering and unwell, I just hide it well and fight the nausea, pain and other side effects.”

Rare Cancers Australia (RCA) has been supporting Megan since her diagnosis. She is an active member of the RCA ACC Support Group, which has meant she has been able to connect with people from across Australia and the globe with ACC.

“I was so relieved that another ACC patient told me to reach out to Rare Cancers Australia. I felt so alone before I found them. Connecting with others who are living with my condition has helped with this feeling of the loneliness that comes with a rare cancer diagnosis and treatment. Beth my Specialist Cancer Navigator has been my absolute angel,” Megan shared.

“But I always say, I’m the luckiest, unlucky person in the world. I am fortunate to have such wonderful support, from Rare Cancers, family, friends, and my work colleagues. I understand not everyone has this support; people really need RCA both for financial support and emotional support.

“That’s why I’m climbing Kosi – because I can, for people who can’t. And to say up yours to cancer!”