Name: Davinya
Neuroendocrine Cancer Primary Site: Small Bowel and Lung
Hospital: The Christie NHS Foundation Trust
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Davinya’s Story
The Unexpected Discovery
My neuroendocrine cancer story started as a result of a ‘stair-diving’ incident in January 2024. I tripped over my own feet and fell from the top to the bottom of the stairs, hitting my head on a concrete wall. After a couple of days, I looked like I had done 10 rounds with Mike Tyson. My face was badly bruised so I visited A&E to get myself checked out. They performed a CT scan and a lovely doctor came in and told me my head was fine but they had found a tumour in my bowel which looked malignant. He said it was very small and that he thought it was a neuroendocrine tumour (NET), and that I would be referred for further investigations. We were shell-shocked by the news. It was a quiet journey home while we tried to take in the limited information we had at this point.
Research
I work as a Solicitor, but prior to this, I was a scientist in Biological Sciences. So naturally, I went home and did my research into neuroendocrine tumours. I had some knowledge as a close friend’s daughter had died from the same type of cancer some years before – and I found Neuroendocrine Cancer UK’s website. I have a very logical brain. Sometimes that is a good thing as it allows me to compartmentalise, so I decided not to worry about anything until I had further information. This has really served me well. Watch our ‘Coping with Neuroendocrine Cancer – Understanding Your Emotions’ video here.
The Christie and Initial Investigations
I was referred to Dr Hamish Clouston’s clinic at The Christie NET Centre of Excellence at the end of February 2024. I underwent a number of scans and it was decided I needed surgery to remove the tumour. We had a further complication in that my daughter was getting married at the end of June and I didn’t want to tell her until after that, so I asked if we could postpone the surgery. My team agreed, provided nothing else was found on my scans, so we told no one. I think this period was harder on my husband given that no one else knew and he had no one other than me to talk to – and I was being my normal logical self, not worrying until I needed to. He was remarkable at holding it all together.
Unexpected Twists and Turns
Next, I had a DOTATOC-PET scan, and on my way down to Wales for my daughter’s Hen Party in April, I got a call booking me in for surgery the following week. That was concerning and I had to tell my daughter and family when we returned home, which was very hard for them to hear. Frustratingly, the day after my ‘big reveal’ to family and friends, I had a call from the hospital telling me the surgery had been postponed as a further tumour in my lung had been revealed by the DOTATOC-PET scan. My consultant thought it would be rare for it to be a NET tumour as there didn’t appear to be any tracking between the two areas, so sent me off to Wythenshawe Hospital Manchester at the end of April 2024 for a lung biopsy.
The Lung Biopsy and Further Investigations
The term lung biopsy sounds very serious and invasive but in truth, it wasn’t. Yes, it was uncomfortable but totally pain-free. I was awake and aware throughout the procedure and the nurses were very reassuring and supportive. The only downside was a nasty taste in my mouth and a sore throat for a couple of days. My consultant then sent me for a FDG PET CT scan at the beginning of May 2024. I cannot fault the care I received and eventually, we got all of the results and had a consultation.
Official Diagnosis: I had Stage 1 NET tumour in my lower bowel, and the same in the lower portion of my left lung, and something happening on my ovaries which was unclear. Surgery was planned for the day after my daughter’s wedding. Slightly inconvenient as no champagne for me but the wedding day was wonderful and went without a hitch.
Surgery and Recovery
On 21 June 2024, my husband dropped me off first thing in the morning and went home to wait for the call that the surgery was over. It was a very difficult day for him. The surgery went well and I was in ICU (Intensive Care Unit) for 24 hours. The nurses looked after me so well. I remember coming round and being really cold and needing a wee. They wrapped me in a ‘bear hug’ which is very warm and snuggly and then I just slept. The ICU nurses were lovely to me, I hate lukewarm water and they even kept me supplied with iced water. Make the most of that because you don’t get anywhere near the same cosseting on the ward. I think I actually enjoyed ICU, being looked after and spoiled. I did have a tube up my nose into my throat, one at my back, and one in my neck but they were fine, they just restricted my walking a little bit.
I was on strong painkillers for two days and definitely not in any pain, just a bit spaced out. I was nil by mouth for three days, not even a cup of tea, just water. That, for me, was the hardest part of the whole process! I was in total, in hospital for six days. You have to stay in until you have a bowel movement which is difficult because you don’t have any food for the first few days.
My biggest issue was nausea. The anti-sickness didn’t work for me so I found eating hospital food and drinking lukewarm water challenging. My husband brought me jelly pots and pots of rice pudding, and I also managed toast and Cornflakes. They tell you to eat well the day before surgery. I didn’t because of the wedding and being too busy to really eat much but I suggest that you do so you have something in there, and I suspect that might have been why I felt so sick. The worst part of the whole thing for me was the gas pain. It was very uncomfortable and lasted for a couple of weeks but overall, the experience was not too bad. Any pain was well managed by the meds and that first cup of tea was bliss.
One tip: Hospitals are noisy all day and all night. I recommend taking in ear defenders and ear plugs as sleeping on the ward is difficult – so I popped in ear plugs then had the defenders over the top and slept like a log. Also take a small snuggle blanket as sheets are starchy. The ward was busy and everything seems to take forever to get done.
Recovery and Return to Work
On discharge day I waited from 9am until 4.30 to get my meds so I could leave. I couldn’t wait to get out. If you expect things to take a long time, and then they are quicker, that’s a win. I was signed off work for six weeks. By week three, I was bored rigid. I hate daytime TV and despite trying very hard to find my creative side with painting by numbers, jigsaws, embroidery, etc. I found that unfortunately, I do not have a creative side, so gave up. I went back to work, just a couple of hours per day to keep my mind occupied at first. I was somewhat limited because sitting at a desk was uncomfortable due to pressure on my bowel when sitting upright, but was back more or less full-time at six weeks.
Unexpected Findings and Treatment
Unfortunately, the results of the surgery were mixed. They managed to remove the small bowel tumour and my ovaries but unfortunately, when the surgeon went in, he found lots of tiny speckles of disease all over my bowel which were so small that they had not shown up on any of the numerous scans and were too small to remove. It was decided to leave them alone for now and also to leave the lung tumour in situ. I have started monthly injections of Lanreotide and a further scan in Spring 2025 to see where we are then.
At my last scan in November, my lung tumour was stable. Confusingly, the oncologist rang to say that they would be taking out the lung tumour because my bowel was cancer free and that hopefully after surgery, I would be cured. I was a little perplexed given what the surgeon had told me about the speckles so I asked her about that. She went away to read his notes. She was mortified when she came back. She was most apologetic and said that she would refer back to MDT. The MDT met and decided to stay with the original plan. The problem is, they cannot know if the speckles are still there or whether the Lanreotide has controlled them because given their size – they don’t show up on scans and the only way to be sure would be to open me up again which no one wants. So we wait… my next scan is in May 2025. Hopefully, the lung tumour will remain stable and nothing shows up in my bowel.
Reflections and a New Chapter
Reflecting on my journey over the last almost 12 months, I feel like I have had it easy when I read about the journeys of other people with neuroendocrine cancer. I feel stronger now because for me oddly, this has been a positive. For me, Stage 1 neuroendocrine cancer in the small bowel and lungs is slow growing and at present, I have no symptoms. I am stable. I will have a scan every six months going forwards so that will catch any other nasties that might raise their heads and receive immediate treatment, how many other people can say that? Most people only find out about these things much later and we know early treatment is vital.
2024 gave me a wake-up call. Life is too short and unpredictable to put things off or worry about tiny things that really do not matter in the grand scheme of things. I am 60 years old and although I love the job I have done for the last 20 years and the people that I work with, I don’t love working in an office, sitting in the same spot at my computer for 40 hours a week and the massive amount of stress running a Solicitors Practice. So, my husband and I have taken the huge step of resigning from our jobs, renting out our house, and moving into our motorhome, working as campsite wardens from March 2025. The work is very physical and socialble. We will be in Scarborough for 6 months, right near the sea, and then who knows where after that. It was a huge step, literally leaping out of our comfort zones which may not be right for some but it feels right for us… scary but right.
So for me, I feel positive and have a bright new future but I know not everyone is as fortunate and I hope that hearing about my journey can help someone else starting down this daunting new road.
Davinya
Written January 2025
- Further support: Neuroendocrine Cancer UK Support Groups