Supporting the

Neuroendocrine Cancer Community

Name: Mel
Age: 74
Neuroendocrine Cancer Site: Primary in bowel, secondary liver initially

Mel’s Story

My name is Mel and I have neuroendocrine cancer which was diagnosed in 2014, along with prostate cancer. I am fortunate to be under the care of the Churchill hospital in Oxford, where I had bowel surgery and liver ablations in 2014. Since then I’ve had 4 weekly Lanrotide injections and recently I’ve had 4 cycles of PRRT. I consider myself very lucky because, apart from a few difficult abdomen episodes and the usual dietary and bowel issues, I lead a fairly normal and active life.

However, in April 2021 I woke up in the middle of the night and all I could see was black. I often wake at this time and I usually go to the toilet. I don’t turn any lights on because there is enough light from streetlights, but I couldn’t see the bedroom door so I didn’t know if it was open. As I could see normally during the day, I didn’t do anything about it for a week or two (perhaps I was being a bit fatalistic and put it down to ageing or something). However, as time went on, my sight during the day began to change; it took a long time to adjust from bright sunlight, a green shampoo bottle turned from green to orange and household lights which were normally white, had a reddish tinge. So I told my wife and decided it was time to do something.

My surgery told me to contact an optician but my local optician had a receptionist whose job was to protect the optician from patients (a throwback from the doctor’s receptionists of the 1950’s era) and as I didn’t want to wait 2 weeks for an appointment, I rang RNIB. I spoke to a couple of people there but they had no answers but suggested I call 111. They were very helpful and arranged for me to go the local Urgent Care Centre that morning. They too were very helpful and told me they couldn’t see anything sinister but arranged an appointment at my local hospital Eye clinic. This appointment was not helpful as I was told I had 6/6 acuity and there was nothing wrong with my eyes. I then contacted Moorfields Eye hospital via nurse led helpline. The nurse was unable to offer any solutions but suggested I should get my GP to refer me to Moorfields, so I contacted my GP and we agreed that I be referred to Moorfields. I was therefore surprised to get a letter advising of another appointment at the Eye clinic of my local hospital, from where I had apparently been reassured and discharged. My GP was also surprised.

In the meantime, my wife had been researching my problem, and Night Blindness can be caused by vitamin A deficiency, which in turn may be a result of malabsorption, the Lanreotide injections and Cholestagel,, (which compensates for the lack of a gall bladder). A vitamin A deficiency seemed a distinct possibility. But none of the eye health professionals seemed to believe this was the problem. I had also been to see an optician at Boots Opticians and she explained very clearly why my eyes were fine, i.e. no cataracts, no macular degeneration, no detached retina, etc.

In the belief that the appointment at the Eye clinic might not offer solutions, I rang NCUK and was lucky enough to speak to Cathy Bouvier; her reaction was that it sounded like Night Blindness! A simple blood test would show if that was the problem and because of the Covid induced problems and delays at the NHS, she provided information on private blood tests. The subsequent blood test showed I had a very low level of vitamin A. I then contacted Tara Whyand, a specialist NET dietician, who had given me good advice in the past, for advice on which supplement to take. I started taking a supplement on 8th June and by 13th June there was an improvement and by 24th June my sight seemed as it was prior to the sudden loss I experienced in early April. I was staggered and delighted at the rapid improvement.

I cannot thank Cathy enough for pointing me in the right direction and for the advice given by Tara. As with all things Neuroendocrine, it is sometimes difficult to get answers, so I relate this experience because if it helps just one other patient, then it will have been worth it.