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Neuroendocrine Cancer: Hurry up and wait

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hurry-up-and-wait

When I was diagnosed with metastatic Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal. That’s what happens to cancer patients with distant metastases is it not? My expectations of what should happen turned out to be wildly inaccurate and in hindsight, I was also wildly naive. You see, with Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn’t work as fast as you would think.

The complexity of the condition needs some consideration as the physicians work up a treatment plan. 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.

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

I had a confirmed biopsy result following some incidental CT scans and other tests. However, they now needed further checks and marker tests to work out the extent of the disease. So the timeline leading up to major surgery ended up like this:

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

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

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

Daily Octreotide Injections: Started 9 September to control syndrome (derisk surgery)

Referred to NET Multi-Disciplinary Team (MDT): 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: 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. With reasonably slow-growing tumours, that 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.

Sometimes rushing straight into the operating theatre isn’t really the best option.  I’m still here!

Keep calm and hurry up and wait!

Thanks for reading

Ronny

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1 Comment

  1. laurie says:

    You lift me up. Thank you.

    Liked by 1 person

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