Diagnosed with Neuroendocrine Tumours: Hurry up and wait

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it’s because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn’t work as fast as you would think and there are very good reasons for that.

The complexity of the condition needs some consideration as the physicians work up a treatment plan, when physician work within a NET structure, other doctors can be involved and rushing into a lone person decision sometimes has adverse effects. I’m quite happy and content they took their time, rather than rush into the wrong decisions. If you think about it, this is an advantage with low and medium grade NETs……you normally have some time to get the ducks in a line. There are some pretty important ducks in that line, and some must be sequencing for the optimum treatment and/or surveillance plan to treat your stage and grade.

So doing it this way is not a delayed diagnosis (in my own case I had that following the biopsy), but this is the completion of a full staging and treatment plan.

The science of why ducks swim in a line is well established – the whole system works better

Here’s a very short video discussing this during a patient video shoot: Click here .

MDT Debated Timeline

I had a confirmed biopsy result following CT scans and other tests. However, they now needed further checks and marker tests to work out the extent of the disease and to check if my tumours were somatostatin receptor positive. So, the timeline leading up to major surgery ended up like this:

Diagnosis: 26 July 2010. Met with Oncologist. Grade 2 Small Intestine NET with distant metastasis (Stage 4). Click here.

Chromogranin A and 5-HIAA: submitted 28 July. Results received 13 August – both elevated, indicating and confirming tumour bulk and functional status respectively

Octreotide Scan: 17-19 August. Report issued 24 August – confirmed CT plus additional distant hotspots. Also confirmed my tumour receptors were avid to somatostatin analogues.

Daily Octreotide Injections: Started 9 September to control syndrome (de-risk surgery)

NET Multi-Disciplinary Team (MDT) meeting took over my case: 15 September – they now had sufficient data to form a treatment plan.

Holiday: Late September (it was booked, and I felt OK, why not!)

Further MDT assessment and consultations: 1- 7 October

Bland Liver Embolisation: 19 October

First Surgery: 9 November – to remove primary and debulk local and regional spread.

You can read the rest of my treatment background here.

So, it took 75 days from diagnosis to opening me up to remove the first batch of tumours. However, with reasonably slow-growing tumours, this isn’t really a long time when you consider they had probably been growing inside me for several years. I’m sure others waited even longer.

I also went on to have two other surgeries, one on my liver and the other to remove some suspect lymph nodes.

My diagnosis was quicker than the above. However, sometimes rushing straight into the operating theatre isn’t really the best option for well differentiated NETs. Doctors need time to get the ducks in a line …… and there are some pretty important ducks in that line.

I’m still here!

Keep calm and hurry up and wait!

REMEMBER! What was good for me, may not be good for you. You may need faster or slower.

Disclaimer

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.

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.