Ronny Allan – Diagnosis and Treatment – Neuroendocrine Cancer

From diagnosis to start of treatment

The build-up to my diagnosis was covered in this blog article (Diagnosis – I’m no longer in Control).  This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score.  It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia.  After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation, I ‘confessed’ that I had been experiencing strange facial flushing sensations since the beginning of that year and had noticed a change in bowel habits.

Then on 26 July 2010, I was formally diagnosed with Metastatic Neuroendocrine Tumours (Small Intestine NET).  Official staging and grading – Stage 4 (T4, N1, M1), Grade 2.  You can see me tell my story on this video – click here

At this point, the NET Multidisciplinary Team (MDT) direction kicked in.  Further tests followed including an Octreotide scan which, in addition to what was found on CT scan, highlighted distant nodal ‘hotspots’ in the left axillary (armpit) and left clavicle areas (supraclavicularfossa (SCF) nodes). Specialist NET markers Chromogranin A and 5HIAA urine were conducted and both were elevated indicating tumour bulk and function respectively.  Some retroperitoneal fibrosis was seen close to important blood vessels including the aorta and inferior vena cava (IVC).

An Echocardiogram confirmed no damage to the heart, an area known to be at risk due to fibrotic reactions that can often be caused by serotonin producing NETs. In September 2010, I commenced daily injections of Octreotide pending a detailed treatment plan.

Primary and Desmoplasia Surgery

My primary was eventually localised in the small intestine (terminal ileum area) together with extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas. I was initially amazed that so much damage could be done in relative silence. My primary surgery in Nov 2010 was preceded by a bland liver embolization. This was on the basis that there might be an opportunity to address liver metastasis during the surgery. However, this didn’t happen due to the extent of the work once I was ‘open’.  My surgeon removed the primary plus many local and regional secondaries and included removal of 3 feet of small intestine including the terminal ileum, a right hemicolectomy, a mesenteric root dissection and a superior mesenteric vein reconstruction.

Additionally, with the assistance of a vascular surgeon, a tricky and high-risk procedure involving the dissection of the large block of para-aortic and para-caval tissue was carried out. This ‘plaque’ like substance technically known as desmoplasia, had encircled my aorta and inferior vena cava (IVC) almost blocking the latter. This was almost certainly caused by a fibrotic reaction to the secretion of excess serotonin from tumours within the gut.

Liver Surgery

Cancer had also spread to my liver. Following recovery from primary surgery, a laparoscopic liver resection (66%) was carried out in Apr 2011, but 3 unresectable tumours remain under surveillance. Shortly after this surgery a chemo embolisation (TACE) was attempted but had to be aborted due to routing issues which resulted from the primary surgery above.

Above the Diaphragm 

Two distant hotspots were highlighted in my left axillary and left supraclavicularfossa (SCF) lymph nodes via Octreotide Scan. In early 2012, one axillary node was now palpable measuring 10mm on CT scan and I had a slight spike in Chromogranin A. Surgery was given and the subsequent biopsy proved 5 of the 9 removed were positive. This area is now free of cancer.  Despite not being pathologically enlarged, 5 SCF lymph nodes were also surgically removed in 2012 but all tested negative on subsequent biopsy.  The left SCF node area is still ‘lighting up’ on Octreotide scan and Ga68 PET/CT.  In 2011, a small 3mm lung nodule was identified and continues to be tracked.  In 2014, a new hotspot (described as a lesion) was identified in my thyroid via Octreotide scan. This lesion also lights up on Ga68 PET/CT, along with a new sighting in the left subpectoral lymph nodes in 2018.

My thyroid issue is currently ‘watch and wait’ following several inconclusive fine needle biopsies although a core biopsy confirmed fibrous tissue only. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the thyroid panel results indicating hypothyroidism. Levothyroxine is a thyroid hormone replacement. There’s an update to the thyroid issue following a Ga68 PET scan which shows intense uptake – read more here

Somatostatin Analogues  

In September 2010, I commenced daily injections of Octreotide pending a detailed treatment plan but after my primary surgery in Dec 2010, I commenced long-term injections of Lanreotide. My hundredth injection took place in July 2018.

Pulmonary Emboli (PE)

I’m also on long-term anti-coagulants following the discovery of Pulmonary Emboli (PE) (blood clots) in my lungs after major surgery, discovered during a follow-up scan.  I was self-injecting Clexane (Enoxaparin Sodium) from 2011 to April 2017 and then an oral version Apixaban (Eliquis) thereafter. To counter the threat of further PEs developing in subsequent surgeries, an IVC filter was inserted prior to the liver surgery referenced above.  This filter remains there today and in hindsight, I now wish it wasn’t. 

Miscellaneous post-treatment issues

I’m no longer classed as ‘syndromic’ and I mainly live with the consequences of cancer and its treatment. It looks like I’ve got mild Lymphedema issues in my left hand and loss of some nerve feelings in my left shoulder, almost certainly a side effect of the left axillary lymph node dissection in 2012 (according to the surgeon who carried out the procedure).

Postoperative issues include malabsorption and pancreatic enzyme insufficiency. It’s also possible that my hypothyroidism is connected to my treatment.