Melanie’s story – living with lung neuroendocrine tumors

Every person’s experience living with neuroendocrine tumors (NETs) is unique and for Melanie, coming to terms with a diagnosis of lung NETs is an ongoing journey, building knowledge and understanding of how to live with this complex and often unknown form of cancer.

Getting a diagnosis

As is so often the case for many people, Melanie’s diagnosis came by chance following a routine check-up for a cough. When a subsequent x-ray revealed some shadowing on her lungs, her GP initially diagnosed her with lung cancer, with a very poor prognosis, something she wasn’t told in the appointment, but discovered in her notes. This caused immense distress at the thought of what this would mean for her future. However, it was only after a biopsy was conducted that the true nature of her diagnosis was revealed: Melanie was in fact living with an advanced form of lung NETs, a term she had never heard of before.

The quest for knowledge

NETs are a relatively uncommon form of cancer that affects the cells of your neuroendocrine system.¹ These cells are found throughout your body, but NETs most often occur in the lungs, stomach, or pancreas.² Most forms of NETs grow slowly and are less aggressive,³ a point the doctor was keen to emphasize to Melanie. However, being diagnosed with cancer of any form is life changing.

While Melanie finally had an answer, the uncommon nature of NETs, especially lung NETs, meant that information about the disease was scarce. Yet, with approximately 35 in every 100,000 people worldwide living with NETs,¹ and lung NETs accounting for 27% of all cases,² this type of cancer is far more prevalent than many realize. In order to seek out more information, Melanie sought a second opinion from a professor at a NETs Center of Excellence, who had the expertise to discuss the complexities of her diagnosis.

While Melanie was reassured that her NETs could be treated, it wasn’t operable. This meant she had to learn to live with it, which is a continually evolving process – and to do so, she had to gain a deeper understanding of this complex disease. Melanie credits a national patient advocacy group for being her crucial support network, offering understanding from others facing similar journeys and providing a hub of information to turn to.

“Everyone is completely and utterly different. But at the same time, incredibly supportive and positive and, even on the really hard days, there is love and you feel like you’re part of a big family.”

Being seen and understood

Having an uncommon cancer can feel isolating. While Melanie feels physically well most of the time, she still shoulders the burden of living with a form of cancer where care options are difficult to navigate and the future is unknown. Recently, Melanie attended appointments with a friend as they were diagnosed with a more common type of cancer highlighting the disparity in care between cancer types. The medical knowledge, funding and specialist support experienced by those with less common cancers can be stark; from a lack of dedicated nursing staff, timely scan results, patient information, support group awareness and even funded parking at hospital car parks.

A long-term outlook on life

Melanie has accepted that her NETs may grow, change, shrink, or spread, but she is still determined to live well; enjoying activities for what they are, not just associating them with providing relief from her diagnosis. Her job as a gardener and recently discovered love of sea swimming means she can continue to enjoy her passion for the outdoors. Learning to live with NETs is an evolving journey, one Melanie is taking one step at a time.