I am a registered Nurse. I was 54 when I really started to feel something wasn’t right. For years I had been living with fatigue, shortness of breath, wheezing, coughing and ongoing bouts of diarrhoea. Every time I had tests done, the results came back “normal.” Even my respiratory function tests showed nothing.
July 2021, at a regular rheumatology appointment, I broke down in tears, I was so frustrated with how dreadful I felt and that no one could tell me what was going on. The doctor ordered a chest CT scan which was done on the 19 July 2021. Only two hours later I got the call – the CT scan showed multiple nodules in all lobes of my lungs, ranging from 4mm to 12mm.
I had previously been treated for thyroid cancer in 2017, so my first thought was that this was metastatic lung cancer. I desperately wanted answers and pushed for an appointment at the respiratory clinic, but the wait was long. I couldn’t sit and do nothing, so I got a copy of the CT report myself and reached out to private specialists to move things forward.
The respiratory physician thought it might still be linked to my thyroid cancer, but no connection was found. Weeks later, my case was presented at a Multidisciplinary Team meeting, but again there were no answers. I was told to come back in six months for another scan. That wasn’t good enough for me.
I pushed to see a respiratory interventionist in Sydney, who performed a bronchoscopy in November 2021 and took a lung biopsy. He thought the nodules looked carcinoid. Four months after my first CT scan, I finally had a diagnosis: a neuroendocrine tumour (NET).
I started researching and made contact with our local ACT NECA Support Group Facilitator who was amazing and the NECA NET Nurse who helped guide me in the next steps and reassure me I was not alone. The NECA NET Nurse made regular contact with me in those early days to check in and see how I was going and where investigations / treatment plans were at.
I was referred to a cardiothoracic surgeon and a NET oncologist in Sydney. I had my first Gallium PET and FDG scan in December 2021 and a plan put in place with the NET Oncologist in Jan 2022. Since then, with regular 6 monthly Gallium PET Scans, the nodules have shown little to no growth or multiplication, which gives me hope.
What has been difficult is how little is known about NETs, both in the community and even among some healthcare professionals. As a critical care Registered Nurse of over 35 years experience at the time of diagnosis – I had never even heard of NET’s and neither had many of my colleagues. I have often had to educate my own GP and other specialists, my family and friends along the way. It has been frustrating and frightening at times, but I’ve learned that persistence really matters. My GP, other medical specialists and I are now on this journey together.
My advice to anyone going through this is to trust your instincts and keep asking questions. Don’t give up until you get answers. It took me years to reach a diagnosis, but I finally did. Today, I feel hopeful knowing that my NETs are stable and I have the right specialists supporting me. The unknown future is still a little scary but I listen to my body and prioritise the people and things that are precious to me .
