I have been living with Neuroendocrine cancer for 12 years. My primary is in my small bowel with metastasis to my liver, and I suffer with carcinoid syndrome, which has impacted my quality of life over the years.

Carcinoid syndrome is caused by neuroendocrine tumours that secrete excessive amounts of hormones, such as serotonin, into the bloodstream. Carcinoid syndrome is a collection of symptoms like skin flushing, diarrhoea, wheezing and rapid heart rate.

I suffer daily with flushing. This is not just a red face, I have a full body flush causing my face and hands to swell, pins and needles feeling in my feet, making it difficult to walk. During a flush, my breathing will be compromised, making me feel like I’m having an asthma attack. I also suffer with diarrhoea and can go to the toilet 5-10 times daily. This often happens with little to no warning, creating panic and urgency when outside the home. I need to navigate my journey, ensuring I know where the next toilet is. Maybe a supermarket or restaurant, and carry a change of clothes as required.

Over the 12 years, I have received multiple treatments to reduce the tumour burden on my liver with the intention to control the excessive hormone release. My condition is currently managed after PRRT, then 12 Cycles of Temozolomide and recently 2 hepatic artery embolizations. I’m also prescribed Telotristat Ethyl, and this has reduced my bowel movements and given me my quality of life back.

The production of serotonin from the tumours on my liver resulted in me being diagnosed with Carcinoid Heart disease. My tricuspid and pulmonary valve had become damaged, and I needed them replaced. I had open heart surgery to replace those valves, and then 18 months later, a further surgery by TAVR to replace the valves again through an artery.

I also find that what I eat has a big difference in my quality of life. I keep a food diary and note any changes in bowel movements or increased flushing. I have found that certain foods do have an impact on my carcinoid syndrome, so I have removed them from my diet over the years.

Living with carcinoid syndrome can impact a patient’s life; daily routines can be impacted, and if not managed, quality of life can be poor. I require regular surveillance and treatment from my team so I can continue to make memories with my family and friends.

Craig.