Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010.   I guess one of the reasons I do this is to be thankful that I’m still alive but also, I have a sneaking suspicion that I’m still trying to remember small detail from that period.  It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. 

That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just something chipping away over the years.  My diagnostic triggers were incidental in many ways and a reaction to me telling a GP Nurse that I thought I’d lost a bit of weight.  I still feel lucky that the Nurse thought to investigate further.  If they don’t suspect something, they won’t detect anything.

Scans are great at detecting abnormalities but alone they normally cannot tell which type of cancer you have.  But they very often are the trigger for completing a diagnosis by narrowing down the list of possibilities by enabling focus.  Nonetheless, the wording of my very first CT scan was worrisome.  It’s worth remembering that radiologists report what they see, they are not normally there to formally diagnose, although their input is totally key to the investigations.  As they are doctors, they can suggest possibilities using their own experience.  As you know many NET primaries are hard to see and small intestine NETs can often be particularly difficult. 

However, and I say this in hindsight, if I read someone else’s diagnostic scan today and read “mass in the root of the mesentery”, I would immediately be suspicious of that being a small intestine NET case as that is a common presentation for this type.  And that is exactly what it said on my very first diagnostic scan completed on 8th July 2010 even though the “bowel” was said to appear normal (along with the pancreas, kidneys, spleen, lungs and mediastinum).

The radiologist also confirmed I had at least 6 enhancing lesions on my liver measuring up to 6cm and that they were not typical of hemangiomas (benign lesions).  One of the most worrying additions to the report was the “abnormal rind of tissue surrounding the aorta extending distally from below the renal vessels”.  That was pretty scary to me at the time as I knew the aorta was a critical blood vessel.  This issue was later described as retroperitoneal fibrosis. It still worries me today and is covered by this article – click here.

As if I didn’t have enough jigsaw pieces to play with, I had a concurrent issue going on prior to my diagnosis.  I was seeing doctors about a hydrocele, and I had an appointment to repair that on 15th July 2010, but that plan was interrupted by my NET discovery and subsequent treatment.  I eventually got that hydrocele repaired in Sep 2011. However, the radiologists picked up this hydrocele on 8th July and suggested the possibility of a teratoma without realising my doctors had discounted this possibility.  I don’t have an issue with the suggestion, the radiologist was being thorough. I wrote about this issue – read more by clicking here.

The radiologist also mentioned “extensive lymphadenopathy” (swollen lymph nodes) and suggested my presentation was “consistent with lymphoma or adenocarcinoma” as a possibility. It was neither in the end (note: lymphoma can also present in the small intestine – who knew!).  Despite the usefulness of scans, “tissue is the issue”, and I was to have a biopsy on the liver on 19th July.  Prior to the biopsy, they had no inkling the biopsy would confirm a NET thus why no nuclear imaging specific to NET was suggested at this point.  Clearly, it was something I eventually got done.  The CT scan summarised that “there was almost certainly malignant disease surrounding the aorta, in the root of the mesentery and scattered throughout the liver”. Two out of three were correct, the retroperitoneal fibrosis surrounding the aorta was later found to be benign tissue (thankfully) but I can honestly say that issue scares me more than the NET as it’s not just about malignancy, it’s also about a serious threat to key vessels. That threat still lingers today. 

After the scan, I got a gazillion blood tests.  They even drained my hydrocele (it came back later).  Bearing in mind they had no idea this was a NET case; I did not get Chromogranin A or 5HIAA at this point – why would they?  But after the biopsy result, I eventually got those two tests, both elevated.  

None of the above can be considered a misdiagnosis, it is a normal clinical practice to look at the differentials ahead of collecting tissue. The biopsy took place on 19th of July, and I had a terrible time throughout the procedure with pain and general discomfort probably presenting as anxiety.  The interventional radiologist took 3 core biopsies from my largest liver tumour.  I had mild anesthesia administered and at the time, I (or they) did not know I had carcinoid syndrome, which was to be found out later.  I’ll never find out if there was a connection with my very uncomfortable biopsy and my carcinoid syndrome, so I try to put that to the back of my mind. Five days later and 48 hours before my Oncologist meeting, there was an incident that led me to be admitted to A&E (ER) but you can read about that in “48 hours before diagnosis” (click here).