Dave shares his powerful 20-year journey as a caregiver to his wife Deb, living with stage 4 neuroendocrine cancer. From misdiagnosis to expert care at The Christie, his story offers insight, advice, and hope for other families and caregivers.
Name: Dave
Wife’s Diagnosis: December 2005
Neuroendocrine Cancer Specialist Centre: The Christie Hospital
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Dave’s Story – Caring for a Loved One with Neuroendocrine Cancer
“After much research online, I took it upon myself to get my beautiful wife, Deb, referred to The Christie NHS Foundation Trust in Manchester. For us both, it was a game changer. I wish we had known when the word ‘cancer’ was first mentioned that the UK actually has such places as NET Centres of Excellence.”
My wife’s cancer journey began in December 2005 with what was thought to be a diagnosis of ovarian cancer. Hearing the word ‘cancer’ is a crushing blow, and the inevitable black thoughts flash through your mind. I don’t need to mention them, as anyone diagnosed with cancer knows what I mean.
The consultant we saw following Deb’s diagnosis was convinced Deb didn’t have ovarian cancer because she looked so well, so he arranged a laparoscopy. This showed a cancer in her peritoneum, and a biopsy revealed a Grade 1 Neuroendocrine Tumour with a Ki67 of < 2%. Further tests unfortunately found there to be metastases in the liver and small bowel, so Deb’s diagnosis was already Stage 4 (there is no Stage 5).
Early Treatment and Uncertainty
Deb’s first treatment was three sessions of MIBG, a type of radioisotope therapy and a precursor to the more commonly used PRRT (Peptide Receptor Radionuclide Therapy) today, which was tough, but she got through it. We got on with our lives and adopted a strategy of not worrying about the ‘what ifs’.
During the following five years, Deb’s health was pretty good with six monthly consultations to discuss the results of the 5HIAA urine sample, but no other forms of surveillance. This concerned me greatly, but we were at a hospital that didn’t consider Deb’s cancer to be serious. In fact, in the early days, one doctor said: “Consider yourself lucky it’s not ‘arthritis.” At the time, we both left in tears, knowing that this medic was never going to put Deb on a treatment plan.
As Deb’s husband, I was always asking for scans and other tests, but was dismissed as being overly anxious. Bear in mind this was in the days when there was no access to the kind of services Neuroendocrine Cancer UK offers today, so my own stress levels were off the scale at times.
As the cancer progressed, Deb began to suffer from abdominal pains requiring her to be blue-lighted several times to our local hospital. Unfortunately, that hospital pushed these episodes aside and even asked us to go to another one of their facilities when she was suffering, so they could see how she was at that moment in time and arrange for a scan then.
I recall, we were both at our wits’ end during this period and didn’t know who to turn to. It was very distressing to see my wife suffering. I had a demanding job with a lot of pressure, so with this and looking after Deb, and being there with her for every hospital appointment as well as trying to get the best possible treatment for her without any support, I wonder now how I coped.
Finding The Christie: A Turning Point
It was around this time that I began to do a lot of research online – eventually, I discovered there were actually NET Centres of Excellence in the UK – 14 of them to be precise.
So, I took it upon myself to get Deb referred to The Christie in Manchester, but not before confronting her consultant, telling him what I thought of his bedside manner and lack of a treatment plan.
I mention Deb’s early cancer history because those years were like being in the dark ages compared to now.
In 2020, I also started doing Deb’s Lanreotide injections, again to give us more freedom and control. Our system works well, and it’s not as difficult as some would think.
In August 2011, we arrived at The Christie. They studied Deb’s medical report from the original diagnosis and immediately arranged blood tests and scans. In September 2011, she underwent a right hemicolectomy to remove a tumour that was causing the pain, as well as a few lymph nodes and her appendix. Unfortunately, they didn’t remove the liver tumours as they were too widespread.
I can’t begin to tell you how relieved I was that Deb was now under a hospital that knew how to treat this cancer and cared about her well-being. After her recovery, she was put on 4 weekly Lanreotide injections starting at 90mg, then increasing to 120mg. We had a wonderful few years with no issues whatsoever – just 6 monthly scans and consultations, hearing the words “stable” again and again. Even the diagnosis of diabetes did not seem to dampen Deb’s progress.
Disease Progression and New Treatments
In 2016, scans began to show some progression in her liver, so Deb was put on an oral chemotherapy called Cap-Tem for 6 months. She didn’t feel unwell, but The Christie was being proactive.
In 2018, Deb was offered PRRT and had the prescribed four cycles. This was tough (not as tough as the MIGB), but she tolerated it relatively well. PRRT gave Deb stabilisation and slight tumour shrinkage, and the next four years were again good with no real health issues apart from the toilet visits.
In 2022, she had a liver embolisation to try and zap the largest liver tumour, but it didn’t do what was hoped.
Later that year, Deb started to suffer from lower left abdominal pains, which were making life difficult as the normal painkillers were not helping. The Christie couldn’t fathom out the cause as scans didn’t reveal anything suspicious in that area.
However, in March 2023, she had an operation to remove her ovaries as they too were showing tumour invasion. We were told this was a de-bulking procedure and could not be curative. We were sad to learn at the following consultation that they couldn’t remove the uterus as the disease was too advanced in this area. It was a massive shock.
For a while after this op, Deb’s pains reduced, but unfortunately not for long. The Christie then put us in touch with our local Macmillan Hospice, who took on pain control, and thankfully for now, Deb seems to be on effective medication.
In May 2023, The Christie arranged for us to go to Guy’s Hospital in London for assessment for a further two rounds of PRRT. But following tests, Deb’s blood pressure and slightly low kidney function ruled it out.
Looking back as I write this, 2024 was our most difficult year. Deb collapsed several times and was hospitalised due to a drop in blood pressure because of the meds she takes to try and control, ironically, high blood pressure. The stresses were starting to build again, not because of her care, because The Christie looks after her well, but because her health is now causing her many problems.
In August 2024, we were given a bombshell. Deb’s left kidney was starting to fail due to tumour invasion of the left ureter. This required a nephrostomy (a nephrostomy is a tube that lets urine drain from the kidney through an opening in the skin on the back). We were told this was urgent as there was a risk of losing a kidney. After all that’s happened over the years, this was a major hurdle to overcome. And to top it all, we were told that they wanted to try oral chemo again in the hope that it would slow down liver tumour growth. This time only the Temozolomide, not the Cap, because of Deb’s low kidney function.
The nephrostomy procedure went ahead the following week, requiring an overnight stay. On discharge, we were on our own with only District Nurses to fall back on. I found this very stressful, and so again did my own research to find a better way for us to be independent and take control of looking after a nephrostomy. After trying a few different nephrostomy suppliers and asking the District Nurse to train me in changing the nephrostomy bag, I now do this twice a week for Deb, which is a massive relief for both of us as it gives us back some kind of control.
But let’s be clear. Having a nephrostomy is life-changing, and in all the years of Deb having neuroendocrine cancer, this is the worst yet. It dictates our every day living with a worry of getting a UTI or worse, sepsis. By June 2025, Deb will have had 8 rounds of Temozolomide oral chemo and fingers crossed, the next scan shows either shrinkage or at least stable disease.
Reflection, Resilience, and Advice for Others
This is a long story, one that’s been difficult and challenging for me to write , but in between therapies, the years have been good and happy despite sharing our lives with cancer.
If I could offer any advice, it would be to ensure care at a UK Centre of Excellence for neuroendocrine cancer. Our earlier experiences show that the care and stresses of not being so affect one’s mental and emotional health. Be your own advocate to keep asking questions. If you are a carer, try to be there for every hospital appointment so that you can pass on to your loved one anything they may have missed during these difficult times. Importantly, make time for yourself too and do what makes you happy because without an outlet, it can be challenging.
Dave
Written June 2025
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Further Support:
Neuroendocrine Cancer UK – Family and Supporters Only Group (UK)
A closed private group for family members, caregivers, and loved ones supporting someone with neuroendocrine cancer in the UK. This group offers a place to share support, advice, and encouragement among caregivers and family.