I’m publishing this 14 years to the day I walked out of hospital holding the hand of my wife Chris.
After a diagnosis of advanced Neuroendocrine Tumours on 26th July 2010, many things were lined up for me. Some were on the critical path and had to be sequenced. Many of them were pieces of evidence to support a treatment, which for many with advanced Neuroendocrine Tumours, offered the best hope for living longer – debulking surgery.
People with very aggressive cancers at Stage IV may not be offered surgery, but one of the features of low grade metastatic NETs i.e. advanced cancer, is that tumour bulk/cells can be successfully reduced (debulked) by surgery. This is a common approach with small intestine NETs.
I sometimes us the term ‘postcode lottery’, a term roughly meaning the unequal provision of services such as healthcare, depending on the geographic area or postcode. I believe I got lucky as not only was there a burgeoning NET multidisciplinary team (MDT) forming locally, but also, the initiative was headed up by a superb surgeon already highly experienced in abdominal surgery including Gastroenteropancreatic NETs (GEPNETs). I knew from my Oncologist that I was to be referred to this surgeon. He was well known for his aggressive approach in situations where other surgeons might not take it on.
I got to meet him around 6 weeks after diagnosis. In addition to regular small intestine and liver tumours, he was also focused on the radiological findings of a ‘plaque like substance’ surrounding my inferior vena cava and aorta at the level of the renal veins, a tricky place to operate. He also saw that as a risk to long term quality of life. The issue was more formally described as ‘Retroperitoneal Fibrosis’, a phenomenon similar to the desmoplasia often found in the mesentery, and the fibrosis caused by carcinoid heart disease. All of those things are related to overproduction of serotonin by NETs.
On 9th November 2010, he had planned to tackle the liver if he had time but the amount of work in the retroperitoneal cavity on the plaque stripping part of the procedure, meant that was deferred to a few months later when I had recovered from this operation. In the end, the liver surgery took place around 20 weeks later and while tough, it was a walk in the park compared to this one.
18 days was a much longer time than my surgeon had planned, he had initially told me in the area of 10-14 days. But things can go wrong, surgery is risky and it’s not really about how many things can go wrong, it’s about how healthcare professionals deal with it. I was very compliant and had trust when I was told “you need to stay in until we are happy you’re fit to go home”. I had already passed the ‘fitness’ test in terms of walking including stair use, so I took the extra time to become fitter while my white blood count came down.
So, on 26th November 2010, unlike my walk to the theatre for the surgery, I took the offer of a wheelchair to the hospital exit and then home. I guess I felt more vulnerable. In fact, as Chris drove me away, I confess to some dread that I would no longer have doctors and nurses ‘on tap’. That was lightened somewhat by having the home and mobile number of my surgeon who said call me night or day if you’re worried.
You can read about my 18 day hospital stay by clicking here or on the graphic below.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Thanks for reading.
Blog Facebook. Like this page please.
Personal Facebook. Like this page please.
Awareness Facebook Like this page please.
Follow me on X (formerly twitter)
Check out my online presentations
Check out my WEGO Health Awards
Long-axial field-of-view (LAFOV) systems have changed the field of molecular imaging. Since their introduction, many PET centres have installed these next-generation digital systems to provide
Crinetics Announces First Patient Dosed in Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumours and Other Somatostatin Receptor 2-Expressing Tumours Read the
Here is the monthly summary of December 2025 on RonnyAllan.NET – Every share helps someone understand or even work towards a diagnosis, discovery of the
Summary of 2025 from Ronny It was a good year for my advocacy work but a difficult year personally which had some impact on my
15 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas activities including my first Christmas following diagnosis of advanced
A Global first for NET. Omni 128cm Total Body PET at the Peter MacCallum Cancer Centre in Melbourne Australia. According to Professor Michael Hofman, they
My diagnosis came with many strange words including, “carcinoid” and “neuroendocrine” ……… can you spell that please, I said to the doctor. I had a
Ronny Allan’s ‘PoNETry’ © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one about Lanreotide (or “butt
When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Subscribe to get the latest posts sent to your email.
