Name: Matthew
Neuroendocrine Cancer Site: Lung
Neuroendocrine Cancer Hospital: University Hospital Southampton
–
Matthew’s Story
Matthew’s StoryEarly Signs and a Shock Diagnosis
It was the summer of 2021, when my wife, Alice, was pregnant with our second child, and our first son had not long turned one… I began experiencing redness to the face, facial swelling & diarrhoea. Unsure what was happening, I started to see my GP for a suspected skin condition, eventually being referred to the Dermatology Clinic at St Mary’s Hospital in Portsmouth. Following a skin biopsy, they were no further forward with what was happening, and I had now started to experience extreme tiredness, which I put down to having two children under two and my job as a pipe fitter.
Still looking for clues, I then had a full-body CT scan at St Mary’s Hospital.
To our shock, at the end of December 2021, I was diagnosed with metastatic neuroendocrine tumours in the lung (also known as Atypical (AC) Lung NETS, with bone and liver metastases, and was referred to Queen Alexandra Hospital immediately.
Coming to Terms with a Difficult Prognosis
Initially, I was given a poor prognosis due to the spread and how advanced my disease was. I remember the moment the consultant told me I had just months left, a meeting forever etched in my memory. Sat beside my wife with a newborn daughter at home and a toddler who needed us.
Treatment and Setbacks
I started monthly Lanreotide injections immediately, and my case was quickly referred to Guys Hospital, London, and Southampton University Hospital NET Centre of Excellence – but to our surprise, my subsequent scans showed no progression, so we decided to carry on as we were.
It was short-lived. Following progression in 2022, it was decided that surgery would be attempted to remove some of the mets in my liver with the aim of resolving some of my symptoms. This took place at the beginning of 2023, but unfortunately was unsuccessful due to blood loss and an ITU admission, as they were unable to remove my tubes due to the swelling on my face and throat.
But following recovery, it was suggested we try a chemotherapy called Carboplatin and Etoposide. I completed 6 cycles in 2024 – but quite quickly afterward, progression was noted, and it was suggested we try PRRT (Peptide Receptor Radionuclide Therapy).
In addition to this, I was started on 3 x 100mg injections per day of Octreotide in an attempt to control my symptoms, and in preparation for PRRT in October 2024. I remain on the injections today.
Life-Threatening Complications
Prior to starting my PRRT, I was quite unwell again. My type of neuroendocrine cancer causes low potassium and electrolytes due to the severe diarrhoea, sometimes as frequent as ten times a day. In August 2024, I was admitted to ITU once again for low potassium, this time falling below 1, so they had to intervene with central lines to pull my electrolytes back up quickly.
Eventually, I was deemed well enough to start PRRT at Guy’s Hospital in London.
My first (and only) cycle was in October 2024, but by November I was unwell again. As Christmas approached, I went into carcinoid crisis and developed an acute kidney injury. I needed medical intervention to save my life and was placed on emergency dialysis. In the days that followed, I was given repeated dialysis treatments, and thankfully, my kidneys began to repair. I was finally discharged from hospital in early January 2025, having made a full recovery.
In May of 2025, I became unwell again; it was believed that the progress of the cancer had once again sent me into carcinoid crisis. My kidneys began to fail, and I was admitted to ITU for 10 days. Amazingly, after a month in hospital, I was discharged home after making a full recovery.
Recovery and Resilience
The good news is that my latest scans show a slight decrease in the lung NETS. My team believe that the one round of PRRT I managed to do may be the cause of this.
During all of this, I’ve come to greatly value good clinical support. My CNS Katie has been absolutely fantastic, and I would also like to thank my consultant’s team and everyone at Queen Alexandra who have helped me along this journey. Katie, in particular, is there for us at every hospital admission, but she also keeps an eye on my wife and family, too. At times when we’ve had close calls, she’s been the calm support we’ve both needed.
Living Beyond the Prognosis
Living with this cancer is an emotional rollercoaster for me and my loved ones. There have been several occasions when we thought we would need to say goodbye. Every hospital admission leaves me a little less able to do what I did before. I’ve not worked for several years, I’m less able to help around the house, and a lot of the responsibility of day to day family life is left on my wife’s shoulders. I have problems with my mobility; I can’t walk far or play with my kids on the floor. Days with the family or trips out can leave me very exhausted.
BUT I’m now 4 years into my diagnosis, having continued to beat my prognosis. In between hospital admissions, I live a happy life. This year, I’ve had the best summer, being able to enjoy sunny days and evenings with my kids – and I do everything I can to not allow this cancer to crush me.
I continue to fight this disease for every extra day. I hope that my resilience and perseverance pay off with the extra time I’m being afforded. And I really hope that this is teaching my children that sometimes the fight comes from within.
In sharing my story and discussing my prognosis, I hope that someone else might realise it’s not the end of your story, but instead, the beginning of a different one. I didn’t ask for this, but I’m making the best of it and doing everything I can to keep going. For me, all that really matters is my family.
Matthew
Written October 2025