I don’t tend to share some very personal stuff but this is on the boundary of that rule and there are some important messages to be teased out.  For those who follow my blog in detail, you may remember the post entitled “Neuroendocrine Cancer – Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences” (now named “a difficult jigsaw)   As you can see from the title, I got hooked on a bunch of ‘synonyms’ that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else.  You’ll note they all begin with the letter ‘S’ except ‘Comorbidities’ and ‘Coincidences’.  These 2 were actually retrospective add-ons to the blog title and there is a potential overlap between both.

Life is actually full of coincidences and I’m certain this is also the case with issues NET patients have from time to time.  There is a high possibility some health issues were going to happen before NETs came along, will most likely still happen after diagnosis and it can often seem like the NETs have some causal effect.  As my friend Dr Eric Liu says ‘Even NET patients get regular illnesses’.  I know some NET patients have a real battle with this issue, so this post may help (click here).

I also suspect the same thing can happen pre-diagnosis and if you’re really unlucky, during the diagnostic phase which is what happened to me.   This sort of event has the potential to confuse an already confusing diagnosis!

So here’s a story about my ‘COINCIDENCE’ which eventually turned out to be a ‘COMORBIDITY’ (99% confidence rating!).

Never mind the bollocks – here’s the cancer instead

At the beginning of 2010 (remembering my diagnosis was July that year), I did what all men should regularly do – I checked my ‘chaps’ for lumps.  Sometime in January, I got the feeling my left ‘chap’ was bigger than the right and I monitored that for a few days.  Eventually, it was patently obvious there was an abnormality.  I immediately went to my GP and he diagnosed a hydrocele.  Apparently these are quite common with men.  He was able to quickly work this out by shining a torch through the offending gonad area and as the light came out the other side, this was confirmation it was excess fluid.  He said it might go away on its own but explained there were medical procedures to correct it including fine needle aspiration (not normally a permanent fix) or surgical repair (the most permanent fix).   I left it for a few weeks and as time passed, the size of my left ‘chap’ increased.  It became really uncomfortable and painful so I asked to be referred to a specialist.  Bear in mind at this point, I still didn’t know I had NET which had been burrowing away inside me for years.

Fast forward 1 month, the hydrocele is not yet sorted and I’m speaking to a specialist having been referred for a low hemoglobin score (the trigger for my NET diagnosis).  At this point, I’m convinced there is a connection and amongst the plethora of tests and checks, the specialist also carried out a fine needle aspiration of my left ‘chap’ (I can hear the male audience wincing). The fluid was sent off for testing and subsequently returned negative.  My left ‘chap’ was now back to normal (every cloud…..). By the way, the hydrocele returned around 2 months later.  I eventually got the date for my hydrocele surgical procedure (hydrocelectomy) but decided to postpone it to sort out another little matter …… Cancer!  Although the specialist found nothing wrong with my enlarged chap, he did find my cancer.

I eventually got it repaired in Sep 2011 after 14 months of NET treatment and had no issues since.   Now…… I can almost hear the cogs turning …… the testes are an endocrine organ etc.  I’ve been through this cog turning exercise too, I was still suspicious for a year after diagnosis. However, I’ve been categorically told there is no connection and there is nothing showing on ultrasound, CT scan or Octreoscan.  That said, something was observed in my ‘chaps’ in the 2018 Ga68 PET scan and “likely inflammatory” would seem to back up what I’ve been told.

However, I did my duty, I checked my chaps, found an issue and fortunately it was nothing too serious. Crap timing though!

Check em’ lads!