Name: Midge
Neuroendocrine Cancer Primary Site: Small Bowel
Diagnosed: December 2023
Neuroendocrine Cancer Specialist Centre: Queen Elizabeth Hospital, Birmingham
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Midge’s Story
“Mr Jones, we think we can see something on your ultrasound. But it’s indistinct, so we would like you to go for a CT scan next week.”
Despite having the classic symptom of ‘flushing’ for many years, my introduction to the Magical Mystery Tour of Neuroendocrine Cancer was quite quick. It was Christmas 2023 when, almost overnight, my regular views of bands onstage were usurped by regular views of the toilet door as the classic small bowel symptoms kicked in.
This wasn’t a happy time for me as I was looking after my ailing father full-time, so my first self-diagnosed thoughts were of IBS. I told myself not to worry, and it would pass… it didn’t.
Investigations Begin
In January 2024, I made my first visit to my GP, who took my diagnosis on board without too much eye rolling and sent me for an ultrasound. The ultrasound picked up something indeterminate.
“Yes, there’s definitely something on your small bowel and your liver. We need a better look, a urine test and some more blood, so we’re sending you for an MRI …and we would also like to do a liver biopsy.”
Receiving the Diagnosis
In April 2024, I forlornly sat in the consultant’s office at Birmingham’s Queen Elizabeth Hospital, one of the UK’s NET Centres of Excellence. Together with his team from the ‘Department of Concerned Expressions’, my consultant broke the news: “You have a Neuroendocrine Tumour, it’s on your small bowel and I’m afraid it’s spread to your liver.”
Upsetting news indeed, but oddly not as devastating as my active imagination had predicted, a few tears, but at least a bit of understanding. So there and then, after I’d mentally straightened up, I was told about ‘The Jab’. Lanreotide.
Starting Treatment: ‘The Jab’
“The monthly jab will hopefully stop the tumour growing and should ease a lot of your symptoms. You should notice a difference quite quickly,” my consultant told me.
“Right, let’s crack on,” says I, but this is more of a dejected submission than an optimistic agreement.
In the little room next door, I answered some basic health/consent questions, then “lower your trousers” and bam …an 18-gauge needle straight in the upper outer buttock.
I had to wait around for even more bloods, and then I stepped out into the sunshine and an uncertain future. But what’s this? …. I DID feel a bit better. It may have been psychosomatic, but I did feel a bit more chipper, and I actually felt hungry for the first time in a while (remember, this is my personal experience).
Arriving home, I started picking through the fridge and actually WANTED a larger meal that night. Turns out this was a Rookie mistake as the first noticeable side effect was major bloating … bring on the night of many unholy wind noises.
Over the following weeks, I saw a definite improvement in my well-being and bowel habits (helped also by the addition of a Creon prescription). “Things are on the up, I thought.”
Second Injection and Side Effects
With the second jab (they skipped from the nursery slope of 60mg straight to the grown-ups 120mg), the bloating wasn’t so bad (lesson learnt re: meal sizes), but there were some aches and pains akin to doing heavy gardening. But this treatment seemed to be working for me, I jokingly referred to it as a ‘miracle’.
I’ve since learnt that Lanreotide is a Growth Hormone Inhibitor as well as having the potential to slow down or stop the growth of some type of tumour. Being a short-arse, I’m just glad that I wasn’t diagnosed at thirteen.
Learning to Self-Inject
After two or 3 hospital jabs, it was basically: “Ok, we don’t want to see your bum cleavage or garish pants anymore, we think you could handle self-administering at home.”
This was set up with Bionical Health (one of the UK’s providers of patient support services for those on expensive meds). A home visit was arranged for some training to help me learn how to inject myself – and I went out and bought some fancy new shorts and tidied the house.
The nurse arrived on time, and training began. She talked through the procedure, the minimal risks (“Mr Jones, we live in litigious times, they’re not going to trust Joe Bloggs with a needle if he’s at real risk of making a hash of it”), and then she handed me a contraption of ‘dummy’ flesh. This is basically a pad with a squishy pink piece of rubber in it, and there are velcro straps so you can strap it to your thigh for a stab at with a practice syringe.
First, make sure your injection is at room temperature before administering by taking it out of your fridge at least one hour beforehand.
Clean the site (soap and water will suffice, the nurse told me; the alcohol wipes are no longer recommended).
Stretch the skin (don’t pinch it), line the needle device up straight like Eric Bristow, X marks the spot, in the needle goes, slow down with the plunger for twenty seconds, and slowly back out with the needle. The practice went well, neither a flinch nor a squeal from the practice pad …so now it’s for real.
With slightly nervous hands, the nurse made sure that I was aware of how I would physically manipulate the needle during the procedure. I took a breath and went for it.
“I think it’s retracted!?” I panicked, but it hadn’t, it had gone in so smoothly that I didn’t feel it, slow down with the plunger, counting to 20, out with the needle, a small spot plaster on the entry point, and it was over. That was it, a few hours later, I did feel a mild dead leg sensation, but this subsided, and a small swelling came up at ground zero, “Don’t worry, some people are just lumpy.”
We arranged a visit for the next jab just so she could make sure that I’d been paying attention, but due to a breakdown in communication, she didn’t arrive. I got a bit jittery, started worrying about the injection being out of the fridge for too long, so I bit the bullet and did it at home alone. Again, no issues and a ‘happy’ face entry went in the logbook.
One Year On: Reflections
It’s been a year now, and my personal observations have been:
- My right thigh is definitely more unhappy with the procedure than the left, but nothing horrendous.
- The day after, my bowels are more on the loose side (with some definite steatorrhea).
- The early days’ side effects of bloating and aches have subsided.
- There are lumps, but the lumps reduce over time, and they’re good landmarks for next time. I also keep forgetting to really relax my leg at jab time. Let it go straight so that the flabby bits are especially loose.
- I also get tired; this may not be related to my Lanreotide (and maybe it’s the cancer itself), but it’s the one thing that does drag me down. But unfortunately, this just seems par for the course for the treatment.
So, if you are thinking of doing the injections yourself, I would highly recommend it. You’re taking back some control; you’re not relying on hospital appointments or transport, and not handing a needle to spouses or loved ones who may have had a bad day!
Sounds trite, but try to stay positive.
Midge Jones
Written June 2025