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 above, 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’. However, 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’. Or was it?
However, in 2023 I read a paper which indicates it might not have been a coincidence and will be sending the paper to my MDT for their consideration (and even education). Probably a bit late but according to several “Belbin Team Role” surveys, I’m a “completer-finisher” so I need to close the loop.
See original story from 2010 below and then read revised story from 2023 below that.
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, crude but effective apparently. 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 started to feel painful, so I asked to be referred to a specialist. (Bear in mind at this point, I still didn’t know I had Stage IV NET that 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, it was checked by the specialist diagnosing me for NET and concluded it was incidental and a benign issue.
I was still suspicious for a year after diagnosis. However, I’ve been categorically told by more than one specialist that there was no connection, nothing cancerous 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. The timing just before my NET diagnosis was crap though!
Check em’ lads!
If you have followed my story above, this may be of interest to you too. I found a paper entitled “Retroperitoneal Fibrosis” dated September 12th, 2022, so, fairly current. Those who have studied my diagnosis and surgery may remember this complication featured on my diagnostic CT scans and also in my surgery (I told that story here also including a primer on the different types of fibrosis connected to NETs). I was again assured there was no connection to the hydrocele. Over the years, doubts remained. I am a believer in a coincidence but also in the healthcare practitioner phrase “correlation is not always causation“.
I eventually let it go even though my gut kept nagging at me. Last month, I was astonished to discover the following study.
click here to read Retroperitoneal Fibrosis – StatPearls – NCBI Bookshelf (nih.gov)
For those who also have this issue (I know at least one other), the section in the linked article above entitled “History and Physical” describes my situation perfectly. BUT …… and this is the ‘pearl’, it also goes on to state an association ……. “A hydrocele may be evident on GU (Genitourinary) exam, as well as testicular tenderness.”.
BINGO!
It’s easy to sound and feel sanctimonious at this discovery and this is in no way meant to criticise my team who have kept me alive since 2010. I mean, they were not involved until 5 months after the hydrocele diagnosis. Who on this planet would know a hydrocele could be linked to retroperitoneal fibrosis (other than the author of the study) or that a combination of a hydrocele and (had I confessed) some flushing and diarrhea, would be linked to retroperitoneal fibrosis. That may have led to a scan which would probably have added the NETs to the conundrum. As it transpired, 6 months later, I got my CT scan following very low hemoglobin results and some weight loss. The hydrocele was eventually repaired in Sep 2011.
And the rest is history in RonnyAllan.NET
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