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 grade NETs......you have 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 other checks and marker tests to see 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)
Octreotide Scan: 17-19 August (report issued 24 August)
Daily Octreotide Injections: Started 9 September
Referred to NET Multi-Disciplinary Team (MDT): 15 September
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 slow-growing tumours, that isn't really a long time when you consider they had probably been growing for several years. I'm sure many others waited even longer.
Sometimes rushing straight into the operating theatre isn't really the best option. I'm still here!
Thanks for reading
Ronny
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