Diagnosis to start treatment
The buildup 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+), Neuroendocrine Cancer 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 Neuroendocrine Tumours. 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 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.
The 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. 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 where it shows intense uptake – read more here
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 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.
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 in my left hand almost certainly a side effect of the left axillary lymph node dissection in 2012 (according to the surgeon who carried out the procedure).
May 2018. My blood glucose is spiking pushing me to pre-diabetic levels – this is under investigation. Lanreotide is a potentially contributing, as is Creon. After 2 repeat HbA1c in normal range, problem subsided but remaining alert.
June 2018 – really bad chest infection, possibly pneumonia.
July 2018 – first Ga68 PET Scan – In July 2018, following my first ever Ga68 PET scan, much of the above was confirmed but added new issues (although some of them may have been there for a while, just not seen properly by conventional scans or by Octreotide scan):
- Left subpectoral lymph nodes lighting up on Ga68 PET.
- Some uptake from retroperitoneal lymph nodes.
- Growth and potentially new areas of desmoplasia (retroperitoneal fibrosis). (actually seen on CT, Ga68 was a check for any avidity). Read about NET fibrosis here.
- Bone metastasis in right rib number 11.
Dropped half a stone (~4kg) following a chest infection in June. Really struggling to put the weight back on but an increase in Creon is helping. January 2019, my weight is almost back to pre – chest infection level. Changed from Creon to Nutrizym to assess differences (in 2021, remain on Nutrizym and gaining weight).
Renal MAG3 nuclear scan confirms no blockages to my kidney/bladder function. As a consequence, surgery appears to be off the table for now but kidney surveillance continues monthly.
Elevated Triglycerides, Vitamins E and B9. Been tracking these every 6 months. Stopped Multivitamin Sep 2020. B9 was a one off, back in normal July 2021. Vitamin E gradually decreasing, almost back in normal range July 2021. Triglycerides back in range (but only just) July 2021, cause unknown.
July 2021 – second Ga68 PET Scan – no change to 2018 above.
June 2022. Diagnosed COVID-19.
July 2022. Annual CT. Stable but scan picked up ground glass opacity consistent with COVID-19 lung inflammation. Repeat in 3 months to assess. Vit E and Triglycerides elevated.
I continue to learn, I watch, and I wait to see what happens. In the meantime, I get on with life. I’m thankful because others don’t get that opportunity.
Despite all of the above:
- I’m still here!
- I looked well at diagnosis, and I look well today. However, you should see my insides!
- I like to think I’m living with cancer, not dying from it.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Top 10 Posts & Pages in the last 48 hours (auto updates)
Thanks for reading.
Sign up for my newsletters – Click Here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell. Given 6 months to live, he refused to accept that
Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in
Survival Outcomes in Metastatic Gastroenteropancreatic Neuroendocrine Tumor Patients receiving Concomitant 225Ac-DOTATATE Targeted Alpha Therapy and Capecitabine: A Real-world Scenario Management Based Long-term Outcome Study
Introduction I’ve written about both 225Ac-DOTATATE targeted alpha therapy (TAT) and Capecitabine before but never as a concomitant pair (combo). So, when this Indian study
It’s hard to be positive when you don’t know how you’re doing. The only way to know how you’re doing is to get professional surveillance.
Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial
Background Well differentiated NETs have been described as an “immunological desert” in recent years mainly due to the poor response rate data coming out of
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
The COVID-19 pandemic filled our vocabularies with more medical terms than most of us would ever hear about, but some were familiar. It soon became