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Background to my Diagnosis and Treatment

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You can hear me talk about the build up to my 2010 diagnosis by clicking on the picture above.  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 finally ‘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).  

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 anti-coagulants following discovery of Pulmonary Emboli (PE) (blood clots) in my lungs after major surgery Nov 2010.  Clexane injections from 2011 to April 2017 and then an oral version Apixaban (Eliquis). 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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47 Comments

  1. Yvette Apollos says:

    2013 diagnosed with bowel cancer. Now neuroendocrine cancer.

    Liked by 1 person

  2. Julie Saul says:

    I’ve just been diagnosed with NET. I don’t think understand how I can feel so good but have Stage IV cancer.
    I’m glad I found your page.

    Liked by 1 person

  3. Evie Ferris says:

    My recent CT scan has shown that despite 6 months of lanreotide injections, the cancer in my liver has grown and multiplied. The lungs and bones are still stable. My doctors are now considering putting me on either everolimis or CAP-TEM. I’m read information about both of them but I’m also interested in any patient personal experience. I understand that the side effects can be a challenge. Thanks for your insight!.

    Like

    • Ronny Allan says:

      This is not like a forum hear but from what I read the side effects are mainly tolerated quite well by most. Good luck with your treatment!

      Like

    • Margo Serrero says:

      I tried afinitor 10mg and was on it for 4 weeks. I really had a bad experience with it. Face breakout (did not bother me so much, nose bleed only for one day. Horrible diarrhea accompanied by huge hemorrhoids, fatigue. The worst reaction was the edema in my toes, feet, ankles and legs. After 5 weeks I still have the swelling and pain. My last office visit they think I may have Lymphedema. I read that it could be caused by afinitor. I am going to a Lymphedema clinic. This is only my opinion but I would start with 5mg and then go up on the dose if tolerable.


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      Liked by 1 person

  4. Evie Ferris says:

    My recent CT scan has shown that despite 6 months of lanreotide injections, the cancer in my liver has grown and multiplied. The lungs and bones are still stable. My doctors are now considering putting me on either everolimis or CAP-TEM. I’m read information about both of them but I’m also interested in any patient personal experience. I understand that the side effects can be a challenge. Thanks for your insight!.

    https://polldaddy.com/js/rating/rating.js

    Liked by 1 person

    • Ronny Allan says:

      Sorry to hear, Lanreotide has anti tumor effects but it does not have the same effect as a targeted tumor drug. Everolimus (Afinitor) is a targeted biotherapy and CAPTEM is essentially a cytotoxic chemo. I’ll try to find some links to personal experiences.

      Like

  5. Lisa Williams says:

    Hi Ronny, many thanks for your response. My husband has grade 1metastatic , pancreatic primary, also in liver, spleen, bones and although slow growing it has managed to be very invasive. He has had 4 sessions already. The specialist did say he may be able to have more, but not sure when. I read an article claiming that another dose of 4 can cause leukaemia. I also heard of a lady in Scotland having 6 sessions, 11 sounds exceptional.Side effects of the two treatments you mentioned do seem typical of chemotherapy. I thought Evrolimus was taken off National Health. Here’s hoping the big scan has no nasty surprises! Many thanks again for your time and thoughts. Lisa.

    Liked by 1 person

    • Ronny Allan says:

      Afinitor and Sutent are not really chemo, more biological therapy or ‘targeted’ therapy. They are now back on the NHS by the way – quite recently. Re PRRT, yes doseage can be key with PRRT which is why people are seriously looking at personalised doses (the lady with 11 is with a centre that does that as far as I know). Europe is ahead of USA I think.

      Like

      • Lisa Williams says:

        Good evening Ronny, many thanks for that information. We have the ‘big sit down’ and scan results on Wednesday. This gives us a lot to put on the table. Huge thanks again.
        Lisa

        Liked by 1 person

    • Ronny Allan says:

      p.s. I think I picked you up on my facebook page here https://www.facebook.com/NETCancerBlog/ I post a lot more on this page than I do here

      Like

  6. vagporto says:

    Hi Ronny,
    I have just found out your blog, and really enjoyed some of your posts. You articulate very well some important points that are not easy to express and that I have never found so well written in other places (namely, how after some time you learn how to befriend your cancer and the overwhelming fear of confusing treatment side-effects with disease progression).
    I am now more than 17 years down the line: diagnosed in april 2001 when I was 31 (surgical resection of small primary in the ileum), normal HIAA and CGA and imaging until 2010 when CT revealed an abdominal mass and a number of small liver lesions. New abdominal debulk, but the surgeons decided left the liver quiet (removed only one lesion for staging). I have well diferentiated (Ki67<2%) lesions, and enjoying my stable disease for the last 7 years with only monthly sandostatin LAR shots. My CGA is slowly increasing and my bowel symptoms are worsening every day, and I am dreading the Ga68 scan that I will do in a couple of weeks. Fortunately I am a professor in a medical school, and have access to Ga68 and PRRT in the hospital across the street.
    All the best to all NETs out there,
    Vasco

    Liked by 1 person

  7. Lisa Williams says:

    Hi Ronny
    My husband was diagnosed after 3 years of going back and forth to G P. He has a grade 1 in his liver, pancreas, bones, splean and bowel. This was 2 years ago. He hasn’t had surgery and chemo didn’t work. PRRT has been amazing, and year on he is riding his bike! He has his big scan soon..fingers crossed. You are very inspiring..glad l found you!

    Like

    • Ronny Allan says:

      Good to hear he is doing OK. Best of luck with the scan! Give him my regards.

      Like

      • Lisa Williams says:

        Hi Roni, hope the holiday is going well. Our consultants has advised Sunitinib
        as the next form of treatment. He has had PRRT a year ago, previous to that Streptozotocin and Capcitabine (which did nothing but damage his kidney.
        I don’t think they will operate because of the bulk of his disease.
        Have you had any research into Sinita nib please? I’m feeling that appart from surgery and PRRT there isn’t much else. How many times can you have PRRT? I have heard twice.
        Sorry for wafling on, grateful for any advice.

        Like

      • Ronny Allan says:

        Hi Lisa, I know that Sunitinib (Sutent) is one of the key targeted therapies out there. There’s also Everolimus (Afinitor) which seems to be more widely used. I do know that some patients have issues with the side effects but they are mostly tolerable. What grade is he? The current PRRT regime is 4 sessions maximum but work is ongoing to personalize dosage. I know one lady in Europe who has had 11 sessions.

        Like

  8. LS says:

    Hi Ronny
    The information and time you have have been putting into your blog over the years is amazing (especially at such a difficult time for yourself) and must be helping many people at such a difficult time. My mum has just been diagnosed with neuroendocrine carcinoma. Can I ask if this is different to what you were diagnosed with. It’s just that I read a comment from Liz below on the 14th August 2016 who unfortunately lost her daughter. Under it you ask if it was neuroendocrine carcinoma which is better known as grade 3 and I’m a little confused now. Thanks in advance for any light you can shed on this matter.


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    Liked by 1 person

    • Ronny Allan says:

      Neuroendocrine Carcinoma us indeed Grade 3. These are Neuroendocrine Cancers but are mire aggressive normally poorly differentiated which means the look and act like aggressive cancers such as lung, colorectal, pancreatic, etc. Treatment is quite different. I have a Grade 2 well differentiated NET. There’s now two different grade 3 classifications. See my blog Staging and Grading

      Like

  9. mark mangiola says:

    Ronny after two years of operations… midgut explosion that sent me into septic shock, then finding the “tangerine” in my liver and removing same (docs always use a fruit reference… 😉 ), I was put on lantreotide after this two year journey… back to Stanford next month to have a few nodes removed and to keep an eye on my liver that has four lesions… I ran across your wonderful work while exploring the drug I was just put on..
    Keep up the good work my friend, you’re an inspiration !


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    Liked by 1 person

    • Ronny Allan says:

      Thanks! Hope you’re doing OK

      Like

    • Vicki says:

      Mark
      Your case or situation is similar to mine.
      However, things happened more rapidly here
      in the Chicago- land area.
      Thank you for sharing. This helps me and most likely others to hear your stories.
      How are u now?


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      Liked by 1 person

      • mark mangiola says:

        Vicki, nice to hear from a fellow traveler… my disease is still progressing and we’re hoping the lantreotide will slow it down… I’m back to Stanford in two weeks to have two lymph nodes removed we’ve been watching for years. I also have some small lesions on the liver we’re keeping an eye on. I feel great, exercise five days a week and frankly don’t let anything slow me down… I am considering having a zipper installed however… It appears I’m destined for a few more operations.
        Hopefully you’re condition is stable… and I’m hoping the lantreotide does that for me.
        Best !
        M

        Like

  10. 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

  11. 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

  12. 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

  13. 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

    • Ronny Allan says:

      sorry I didn’t respond to this comment. Hoeever, I think we communicated by another system?

      Like

  14. 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

  15. 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

  16. 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

  17. 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

  18. jill spencer says:

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

    Liked by 1 person

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