My name is Amanda and I live in Australia. I am a lover of netball. My favorite thing is to take my husband and our 3 beautiful boys to the beach for swims, walks and exploring.
How were you diagnosed and how long did it take?
I was finally diagnosed by ‘accident’ with a burst appendix. I had been unwell and had symptoms for approximately 7 years beforehand, which could never be explained despite seeing countless doctors. Two days after my diagnosis I found out that I was pregnant with my first baby, so this was an extremely challenging time. I was 29 years old at the time of my diagnosis, and my 20s were plagued with ill health.
What treatment have you had and how did it affect you then and now?
After my son was born, I had a right hemicolectomy, which also revealed lymph node involvement. The most difficult part was not being able to hold or properly care for my newborn son, who was only 10 weeks old at the time of my next surgery. From this point onwards, I have regular blood tests and G68 scans to monitor me, and I am currently under what is called ‘watch and wait’ to monitor any changes.
What impact has the diagnosis had on your personal life ?
The biggest impact at the time was the feeling of complete helplessness for my newborn son and simply not knowing or fully understanding what neuroendocrine cancer was. It was not the first time mother experience I had ever imagined and the recovery felt long and isolating. During the 7 years of being misdiagnosed, I missed out on many things because my symptoms were getting worse and more frequent. I became more and more restricted with ‘food intolerances’ which was also challenging to understand. My diet and lifestyle changed drastically the longer that I went without a diagnosis. I found it extremely difficult to work, so I ended up changing careers in order to manage frequent symptoms.
What lessons have you learnt along the way (if any)?
Always listen to your instincts – when something doesn’t feel right, then it probably isn’t. Keep asking questions and searching for an answer, no matter how difficult it gets. Always seek a second, third, fourth (etc!) opinion. Ask for help, no matter how difficult things may seem.
Who’s been your hero? Perhaps it was you!
My husband Phillip, and my family were there to help me and especially our newborn son at the time. And now, my 3 healthy and happy baby boys remind me to live each day to the full and inspire me to keep healthy.
Did you get any help from a patient organization during your journey?
I discovered NeuroEndocrine Cancer Australia (NECA) after the hardest part of the journey, but I was instantly drawn to them and their mission as champions of early diagnosis and a cure. I am lucky to now be much healthier than I once was. I want to help others with this cancer through volunteering my time and patient knowledge, with NECA. I serve on the Consumer Advisory Group and have enjoyed volunteering with NECA since 2016.
How are you now?
I am much healthier now and have just recently had a 3rd baby and completed a 3rd university degree! I feel extremely lucky to have been able to get on with life and my own personal goals. I hope for far better outcomes, healthcare options and earlier diagnosis for neuroendocrine cancer patients, because this cancer is so easily missed.
