Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences).

Despite people’s expectations, diagnosing Cancer isn’t a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient’s treatment. I wrote a blog on 26 July “celebrating” 4 years since diagnosis – it’s worth a read, check it out by clicking here.

Continuing with the ‘four years on’ theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis. I think many people might expect a quicker execution of treatment. However, I cannot remember becoming impatient, albeit mine was to be palliative/cytoreductive (tumour debulking) rather than curative. Sometimes it’s a case of ‘hurry up and wait‘.  I did have a 3-day Octreotide Scan midway within this 6-week period, and this gave me some confidence that I hadn’t been forgotten!

Despite being told my cancer was incurable, I vividly remember not feeling ill enough to be a cancer ‘patient’ and I therefore continued to act and work normally. After getting over the initial shock, a little bit of me still thought it was all a big mistake!

Then, on 6 Sep 2010, I was introduced to the world of ‘Somatostatin Analogues‘ – namely daily Octreotide. Although I was working normally, I was experiencing worsening flushing episodes, some of which were drawing attention at work with one person asking if I had blood pressure problems! The flushing was a result of my metastatic Neuroendocrine Cancer and associated Carcinoid Syndrome. My Oncologist was spot on though, as the flushing and other symptoms had to be brought under control before I could undergo the cytoreductive surgery – I was told that if carcinoid syndrome was active, it could increase the risk of an acute syndromic effect known as ‘Carcinoid Crisis‘ during major surgery could be fatal if not controlled.

I was fortunate enough to have home visits from a Nurse as part of my treatment and ‘Ann’ turned up with a box of daily dose Octreotide (25 micrograms) plus a ‘sharps box’. Ann came to see me the first 3 days to make sure I was able to self-administer – however, I volunteered to stick it in myself on day 1 – in for a penny in for a pound! It did eventually reduce the flushing and was sufficient to counter the risk under anaesthesia.

The daily Octreotide was a bit of a pain to administer though. The dose was in an ampoule which had to be ‘snapped’ open and the (very expensive) drug then had to be aspirated using a wide bore needle from the ampoule into the syringe. Then the needle had to be swapped for a smaller bore which I would then self-inject against a rota of left stomach, right stomach, right thigh, left thigh, and so on. I only messed it up once which resulted in a cut finger and a wasted drug dose. I’m no longer squeamish about injections though!  In Dec 2010 after major surgery, I was converted to a monthly long-acting injection of Lanreotide (same job as Octreotide). This is a thicker and larger needle and is injected ‘deep subcutaneous’ into the buttock by a trained nurse – I’ll most likely be dependent on ‘Somatostatin Analogues’ for the rest of my life but I almost look forward to my 4 weekly ‘butt dart’ (a brilliant term used by my American friends). I suspect these injections are the reason so many people say to me “you look so well“.

I haven’t had a single flush since my first surgery/start of Lanreotide – lucky I’m not a card player!

Please help spread awareness of Neuroendocrine Cancer and hope for newly diagnosed patients by sharing this blog.

Ronny