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Background to my Diagnosis and Treatment

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The build up to my diagnosis was covered in this blog (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.

Then on 26 July 2010, I was formally diagnosed with Metastatic Neuroendocrine Tumours (Small Intestine NET).  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. An Echocardiogram confirmed no damage to the heart, an area known to be at risk due to fibrotic reaction that can often be caused by serotonin producing Neuroendocrine Tumours. In September 2010, I commenced daily injections of Octreotide pending a detailed treatment plan.

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 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 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.

Two distant hotspots were highlighted in my left axillary and left supraclavicularfossa (SCF) lymph nodes via Octreotide Scan. One axillary node was palpable measuring 10mm on CT scan and 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.  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.

I’m currently stabilised on long-term injections of Lanreotide which I have been receiving since Dec 2010.  I’m also on long-term injections of Clexane following discovery of Pulmonary Emboli (PE) (blood clots) in my lungs after major surgery Nov 2010.  To counter the threat of further PEs developing, an IVC filter was inserted prior to the liver surgery referenced above.

My thyroid issue is currently ‘watch and wait’ following several inconclusive fine needle biopsies although a core biopsy confirmed fibrous tissue only.  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). I’m no longer classed as ‘syndromic’ and I mainly live with the consequences of cancer and its treatment.  I learn, I watch and I wait to see what happens.

Despite all of the above:

  1. I’m still here!
  2. I looked well at diagnosis and I look well today. However, you should see my insides!
  3. I like to think I’m living with cancer, not dying from it.

Thanks for reading

Ronny

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15 Comments

  1. jill spencer says:

    Thank you for sharing this. The more we talk about things the more we can change things.

    Liked by 1 person

  2. Enrique Ortiz says:

    Ronny, Wow! Sounds like you have been through a lot. I hope you are doing well. I am happy to have found your blog. Will continue to follow you. Just a little background on me: 2008 symptoms of neuroendocrine cancer show up, then go away a few months later. 2011 symptoms return, diagnosed with neuroendocrine cancer in the ileum; surgery to remove it; symptoms go away for 2 years and return. Tests reveal the cancer is active again, octreotide scan shows tumors in liver and brain; I think I started Sandostatin then. Radiation to brain reduces size of baseball-sized tumor, but I had to medically retire in 2015 due to memory issues. Been getting monthly Sandostatin but two new brain tumors showed up. Now my oncologists want me to do the Cap-Tem regimen but I want to address the issue with diet first. I will do Cap-Tem in a few months. I plan to follow your blog.
    Enrique Ortiz

    Liked by 1 person

    • ronnyallan says:

      Thank you Enrique. Sorry to hear about your issues. You will most likely be having nutritional issues from terminal ileum surgery, check out my Nutrition blogs 1, 2 and 3. If you cannot find them let me know.

      Like

  3. pheofabulous says:

    As a fellow zebra – but with metastatic pheochromocytoma, I commend you for sharing your story with such clarity and poise. We need more people spreading the word, I do so much appreciate reading your blog. Thank you 💛

    Liked by 1 person

  4. Walid says:

    Thank you for sharing this with us, actually, my wife has a NET in deodenum with liver & lungs metastatic, your experience will help her for sur….

    Liked by 1 person

  5. Liz says:

    I’ve been in a blur, the Twilight Zone for a little over 2 years, since my daughter was first diagnosed with NET Cancer in February of 2014. First diagnosis we were told she had 5-7 weeks to live, then it was 5 months. She was a fighter and lived for 2 years, passing away on June 15, 2015. It was a rollercoaster ride of being in and out of the hospital, rehab, being told to make final arrangements….I will be reading your blog very closely and get every bit of information I can. I always felt, and still feel that something was not right about the treatment my daughter was given.

    Liked by 1 person

  6. Rety Bruce says:

    Thank you for sharing! I am new to NET! In the process of diagnosing! I had a CT scan and found a 2.1 by 1.6 tumor in the left side of mesentery ! My liver is ok! My 24 hour urine test is ok, my Chromogranin A is 141 should be under 90. I am seeing a surgent tomorrow. What would be the best test to diagnose NET? Octreotide Scan? Wish you well! Thank you in advance for your help! HUGS!

    Liked by 1 person

    • Ronny Allan says:

      You need evidence of tumours, so CT scan would pick up most. CgA and 5HIAA for the most common types would confirm tumour bulk and functionality respectively. Follow up Octreotide and/or Ga68 scan would confirm spread (stage) …… it would also confirms tumours are avid to somatostatin analogues (i.e. receptors are good), this helps with treatment plan. Ga68 is newer, less available and more sensitive. Biopsy would confirm grade (aggressiveness). Is your surgeon NET aware?

      Like

  7. I have MEN1 and have had several surgeries. Just found out I have a nueroendocrine tumour under my left armpit….I meet with the doc tomorrow…freaking out,

    Liked by 1 person

    • Ronny Allan says:

      Don’t freak out, it’s an easy operation. I was in and out same day. Few bouts of fluid collection build up which is pretty normal. Fine needle aspiration sorts, pretty much painless. Make sure they biopsy something. How did they spot it?

      Like

  8. Pat Wetzel says:

    Ronny,

    I love your blog and would like to connect. Drop me an email at pat@anticancerclub.com if you would!

    Thank you! Happy holidays!

    Liked by 1 person

  9. desertedrose says:

    Hmm. Funny enough, this is how I describe myself: I’m not dying from cancer; I’m learning to live with it. Yes, I look good, but my doctors are trying to see how many organs I can live without! And on 14 Feb 2017, I plan to say I am here 10 years down the line.

    Liked by 1 person

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