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More trouble with the NET

“But it works… I read it in the news!”

“But it works… I read it in the news!”

You may remember my blog entitled The trouble with the NET which was a light-hearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.

They have just produced a follow on blog about Alternative Therapies which is written in a similar vein.  I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence based approach and do not publish these things lightly.

One bonus and very interesting aspect of their new blog is that they discuss the Steve Jobs issue, excellently making the point that he did not have Pancreatic Cancer  – but rather he had a Neuroendocrine Tumour (NET).  We all know this but many newspapers, magazines and bloggers frequently get this wrong.

The link to the article is here – worth a look:

Alternative therapies: what’s the harm


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A deadly cloud but with a silver lining for Cancer: Chemo for NETs

chemotherapy-hand-and-armOne of the great things about learning is that it never ends 🙂   I came across this piece of information about how chemotherapy was invented. I had no idea.  It began as a deadly cloud but it eventually ended up as a silver lining for certain cancer patients.  It all began with the development of mustard gas and I’m sure we’ve all seen the awful pictures of solders leading each other from the battlefield having been affected by this ‘deadly cloud‘.  Let’s hope we never have to witness that again.  This weapon was first used 100 years ago this week (note: blog published in Apr 2015) but out of the horror came a ‘silver lining‘ – the idea behind what is now called chemotherapy.

However, the development didn’t really begin until the second world war when two doctors from Yale University (Louis Goodman and Alfred Gilman), conducted animal and then human trials.  Then in 1948, UK scientist Professor Alexander Haddow published a ground breaking piece of research in the journal Nature, showing exactly which bits of the nitrogen mustard molecule were needed to kill cancer cells. Perhaps more importantly, he also found out how to make the chemical less toxic, but with more potent cancer-killing activity. So mustard gas went from the very real battleground of the WWI trenches into the frontline of cancer treatment where it still is today.

You can read more about this on the Cancer Research UK Science Blog

Chemotherapy and Neuroendocrine Cancer.  One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a standard treatment unlike many other cancers. Systemic chemotherapy is often inadequate for treatment of Grade 1 and 2 Neuroendocrine tumours, because these tumours tend to have a well-differentiated histology and low proliferation index – standard chemotherapy does not appear to like their slow cytokinetic growth. However, chemotherapy appears to be frequently deployed for use with very advanced and/or high grade Neuroendocrine tumours (i.e. carcinomas).  My Oncologist did mention Chemotherapy on my initial meeting and I was once scheduled to have a chemo-embolisation (TACE, Trans-arterial Chemo Embolization) but it never occurred due to post surgical routing issues. Clearly TACE is more targeted than conventional and generally systemic chemotherapy techniques.

However, chemo remains a first line treatment regime for Grade 3 NETs (Carcinomas).  The NET Patient Foundation indicates several combo treatments are possible:

• Cisplatin + Etoposide
• Carboplatin + Etoposide
• Capecitabine + Temozolomide
• Temozolomide + Bevacizumab

Capecitabine plus Temozolomide (CAPTEM for short) have been trialled on low grade NETs though.  Dr Robert Fine says the results of the trial showed “tremendous responses in every neuroendocrine tumor”. The treatment elicited a response rate of 45% and a stable disease rate of 52% including those with carcinoid and pituitary tumours – types of neuroendocrine tumour that are notoriously ‘chemoresistant’.  You can read more about this here (click here) and you can also listen to Dr Fine enthusiastically talking about this on a short You Tube video clip – (click here).

1461338752142New section added May 2016.  A trial of ‘TEM’ and TAS-102.  I picked up another piece of information about chemo for NETs in US.  This trial is thanks to the good work of the The Aly Wolff FoundationAly Wolff died of neuroendocrine cancer on April 22, 2013, however her courageous battle continues. Today, three years later, a new clinical trial at the University of Wisconsin Carbone Cancer Center has been approved and holds great promise in offering a new line of treatment for those with neuroendocrine tumors.  This Phase 1b trial, which is open to those with low or intermediate grade NETs of any tissue origin to determine the tolerable dose. Then, it will enrol pNET patients from across Wisconsin and, if more patients are needed, may include partner sites through the Big Ten Cancer Research Consortium. Patients will receive the chemotherapy for one year or until the disease progresses, whichever comes first.  The trial will comprise a combination of temozolomide (the TEM in CAPTEM) and a newer drug, TAS-102, (related to capecitabine (the CAP in CAPTEM) but has a different mechanism of action). TAS-102 was approved for colon cancer patients last fall and many of those patients who no longer respond to capecitabine show a response to TAS-102.  If this trial is successful, then we are one step closer to adding another line of therapy in treating neuroendocrine tumors.

You can read more about the trial here

In Australia, they’re also using a combo treatment of chemo (CAPTEM) and PRRT – I blogged about this here.

There’s also a useful surgical technique which includes the use of intra-operative chemo, known as “Chinese Dumplings” – I blogged about this here.

If in doubt about suitability for any form of chemo, patients should seek the advice of a NET specialist.

Thanks for reading

Ronny Allan

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Carcinoid – misnomer or misunderstood?

carcinoid-tumour_342x198_M1320462Recently, there’s been a debate on forums regarding the validity of the term ‘Carcinoid’.  I thought I’d gather my thoughts and put to paper. Although the issue is potentially complex , there is one really simple way of looking at it – Carcinoid is a type of Neuroendocrine Tumour (NET) and you will find that classification in dozens of booklets and websites internationally. However, like anything in the world of ‘Neuroendocrine Tumours’, it would be too easy to leave it there.

You may have noticed that ‘Carcinoid’ is often used as a standalone word and tends not to be suffixed with the word ‘Cancer’ or ‘Tumour’ – unlike Bowel Cancer, Breast Cancer, Prostrate Cancer, Lung Cancer, etc.  Nobody goes around saying “Breast” or “Bowel” do they?  But they happily say “Carcinoid”.  Unfortunately, the term ‘Carcinoid’ has become entrenched in both pathology and clinical literature over the past 100 years. The problem with the word Carcinoid is that it means different things to different people. Some use the term almost exclusively to designate serotonin-producing tumours that result in carcinoid syndrome. Some use it to (incorrectly) refer to all Neuroendocrine Tumours. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour.  That is dangerous thinking and will kill people. Check out my blog post “Benign vs Malignant”.

Siegfried Oberndorfer

Siegfried Oberndorfer

I’m not a medical professional or scientist and as a consequence I’ve confined my research to a few reputable sites so that I stick to facts. However, the following history of ‘Carcinoid’ is well documented – Siegfried Oberndorfer (1876-1944) became the first to adequately characterise the nature of Carcinoid tumours and refer to them as “benign carcinomas.” During his tenure at the Pathological Institute of the University of Munich, Oberndorfer noted in 1907 that the lesions were distinct clinical entities and named them “karzinoide” (“carcinoma-like“), emphasizing in particular their benign features. However, In 1929 he amended his classification to include the possibility that these small tumours could be malignant and also metastasise. (Author’s note – a name change would have been handy at this point).

According to A Review of Carcinoid Cancer written by Dr. Richard Warner, “…..they were found to arise from enterochromaffin cells (glandular endocrine-hormone producing cells) of the diffuse Neuroendocrine System.  These cells are widely distributed in the body but found in greatest amounts in the small intestine and then in decreasing frequency in the appendix, rectum, lung, pancreas and very rarely in the ovaries, testes, liver, bile ducts and other locations. These cells have special peculiar features that make them identifiable under the microscope. They stain in a special way when put in contact with silver containing chemicals. Special stains for the particular hormones that enterochromaffin cells can make will identify the hormone substances in carcinoid tumor cells and thereby confirm the diagnosis of the microscopic exam on biopsied carcinoid tumors.” Dr Warner goes on to describe them as “midway between carcinomas (cancers) and adenomas (benign tumors) adding that if overgrowth is somewhat limited and does not spread to other areas or threaten to squeeze out or replace adjacent structures, it is considered to be a benign tumor, that is, not life threatening. However, if the growth is more aggressive and threatens surrounding tissues or sends “seedlings” (metastases) to grow in distant areas then it has potential to be fatal and is considered malignant; that means it is a cancer.”

The American Cancer Society (ACS) describes them as “…..Like most cells in the body, GI tract neuroendocrine cells sometimes go through certain changes that cause them to grow too much and form tumors. These tumors are known as neuroendocrine tumors (NET) and neuroendocrine cancers. In the past, most abnormal growths of neuroendocrine cells were called carcinoids. But in 2000, the World Health Organization (WHO) reclassified carcinoids as neuroendocrine tumors and neuroendocrine cancers. Neuroendocrine tumors are growths that look benign but that might possibly spread to other parts of the body. Neuroendocrine cancers are abnormal growths of neuroendocrine cells which can spread to other parts of the body”. ACS goes on to say “Neuroendocrine cancers (also known as neuroendocrine carcinomas) are divided into groups based on the way the cells look under a microscope:

  • Well differentiated neuroendocrine cancers have cells that do not look very abnormal and are not multiplying rapidly. These tumors tend to be less aggressive, meaning that they tend to grow and spread slowly. Well differentiated neuroendocrine cancers can look identical to benign neuroendocrine tumors when examined under the microscope. Sometimes the only way to know for certain that a mass is a neuroendocrine cancer (and not a benign tumor) is when it spreads to other organs or tissues.
  • Poorly differentiated cancers have cells that look very abnormal and are multiplying more rapidly. Poorly differentiated cancers tend to be more aggressive, meaning that they grow and spread quicker”

Other sites (including NANETS and ENETS) refer to the WHO classification and it is here another term is introduced – Neuroendocrine Neoplasms (NENs).  NANETs state that “all of the entities under discussion are neoplastic, and neoplasm is therefore a more accurate term than tumor, which means only a mass“.  It’s important to understand the difference between grade (aggressiveness) and differentiation (the extent to which the neoplastic cells resemble their non-neoplastic counterparts). Well differentiated tends to align to Grades 1 and 2  and Grade 3 is aligned with poorly differentiated.  An understanding of Stages and Grades is really fundamental to understanding Neuroendocrine Tumours (READ HERE)

During this research, I found an excellent summary document produced by The NET Alliance (Novartis) which not only confirms some of the nomenclature issues described here (including the history) but also excellent summaries of grades, stages and differentiation classifications which would support any suggestion for a change.  The latest adopted nomenclature system applies the terms Neuroendocrine Tumour and Neoplasms to GEP NETs but still uses the term Carcinoid for Lung and Thymus. However, digging further, I can see that the Lung and Thymus classification relates to a 2004 agreement and I suspect might be updated in line with GEP NETs in due course.

At the crux of the issue is the fact that Carcinoid’s credibility in the cancer world is perhaps underrated due to the legacy medical definition of Carcinoid as ‘Carcimoma like‘, inferring not a ‘proper cancer’.  In addition, there is a tendancy by some to use the term Carcinoid and Neuroendocrine Tumours interchangeably which is clearly incorrect. Use of the term “Carcinoid and Neuroendocrine Tumors” as a grouping of cancers in USA and other countries isn’t helpful either.

I believe that the term Carcinoid is a misnomer when you consider the large amount of malignancies experienced by Neuroendocrine Tumour patients and today’s researching has cemented that view. The historical meaning (i.e. the misunderstanding) of the term ‘Carcinoid’ does not help. The term does not adequately convey the potential for malignant behaviour that accompanies many of these neoplasms (i.e many patients present with metastasis confirming their propensity to spread).  Like any suspect growth found anywhere in the anatomy, some are found to be benign (not cancerous) and some are found to be malignant (cancerous).  In my humble patient opinion, if cells grow and multiply out of control and have the potential to spread; or have spread – that is cancer. Consequently, ‘Neuroendocrine Cancer’ sounds good to me thus the name of my blog.

I believe we do need to get rid of the term Carcinoid BUT …… new nomenclature to describe what was the original histopathological grouping called ‘carcinoid tumours’ in their various anatomical locations are required as there will still be a need to distinguish those from other types of NETs. For example, when someone wants to know the specific type of NET you have, you can’t just say “NET”.  Foregut, midgut and hindgut does not drill down deep enough for understanding.  Prefixing your net with an anatomical location sounds feasible, although it does split up pre-defined biological groupings spread across foregut/midgut/hindgut.

However, when someone wants to know which syndrome you have, you can’t just say “small intestine syndrome” or “midgut syndrome”.  ‘NET Syndrome’ doesn’t work either as there are several NET syndromes.  And of course someone of influence in the medical world needs to come up with suitable and widely accepted terms for ‘Carcinoid Syndrome’, ‘Carcinoid Heart Disease’ and ‘Carcinoid Crisis’. Leaving these terms in place is not a good idea.  It doesn’t help that many organisations continue to use the word ‘Carcinoid’ in their organisation titles.  It is also not helpful that many patients continue to refer to this disease as “Carcinoid  Neuroendocrine Tumour” or variations along these lines.

This needs to be resolved by senior physicians and advocate organisations in the NET Community.

Thanks for reading

Ronny Allan

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Cancer doesn’t take holidays (but I do)


Mt Jacinto near Palm Springs

After diagnosis in July 2010, holidays were put on the back burner, there were too many problems and too many risks – not least of which was the lack of overseas insurance cover for my condition (well, I’m sure they’d quote me but could I afford it?). After 2 years of treatment including several surgeries, I was feeling more confident and my body had become stronger, holidays were put back on the agenda, but nothing too strenuous, nothing too far away.

However, 2 more years down the road, Chris and I are just back from a 12,000 mile round trip (21 hours on an aeroplane), around 1200 miles/20 hours of driving from beaches to deserts and mountains and back again, 8 different hotels and some great sights and adventures including 200 miles of driving in the Californian ‘wilderness’ picking up some sections of Route 66.  The picture in the blog needed a ‘white knuckle’ cable car ride up to 8500 feet followed by a 2 hour hike in noticeably thinner air.  Worth it!

Did I have issues? Yes. Were they inhibiting? Not really. Was I exhausted on return?  Yes (….I still am!). Did my travel insurance cover me for NET Cancer treatment? No. Was it worth it? Absolutely, I was extremely confident I wouldn’t have a NET Cancer problem and was therefore happy to take the risk (everyone needs to take their own decisions). My travel insurance at the time covered me for all other medical emergencies worldwide and within the European Union (EU) countries I’m covered for medical treatment using the E111 system – however, the latest trip was to California where medical treatment can be very expensive for the uninsured.  Note – in 2016, I’m now covered for NET treatment worldwide.

Holidays now have to be planned around treatment, mainly monthly injections – not too much of a drama.  I have to take my daily blood thinning injections with me on the plane. I have a letter from a Doctor to explain but I’ve always been waved through without question. When required, I will change a monthly injection date by up to a week each side – no issues to date.  That said, I’m impressed by the logistical talent of my friend Hilary, she’s gone to Australia for a month and has arranged an Octreotide injection whilst she’s there!

Cancer doesn’t take holidays, but I do.  Sometimes, you just have to get on with it 🙂


Thanks for listening


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No Fear


It’s that time again, every 6 months I need some checks.  I’ve done the specialist blood test (Chromogranin A – CgA) and the 24 hour urine (5HIAA) and am waiting on my CT scan appointment. It’s also time for my annual Echocardiogram and a DEXA bone scan (I’m on long term blood thinners (Clexane) and there is a risk of osteoporosis). I then see my Consultant and he delivers the news.  Happy days 🙂

I positively look forward to my tests and I cannot wait to get into that scanner!  ‘Scanxiety’ isn’t in my dictionary.  Why? Because testing is one thing that’s going to keep me alive for as long as possible.  If I don’t get regularly tested, then one day I might just ‘keel over’ because something wasn’t spotted early enough.  Even in the event of ‘not so good news’, I still see that as a positive because it means the testing is working and an investigation or further testing can be put into place to find the problem – and the sooner the better.  Where’s that scanner, get me in it!

One of the most common posts on NET Cancer forum sites is to express personal concerns or worries about upcoming appointments or waiting on the test results. Thinking back to my own countless appointments either for testing, treatment or for receiving results, I appear to be consistently pragmatic in my approach. The test results will be what the test results will be.

Bring it on!

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