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‘Chinese Dumplings’ and Neuroendocrine Cancer

Chinese Dumpings

Chinese dumplings

One of my daily alerts brought up this very interesting article published in the Journal of Gastrointestinal Oncology last month (June 2015).  I personally found it fascinating. Moreover, it gave me some hope that specialists are out there looking for novel treatments to help with the difficult fight against Neuroendocrine Cancer.

This is an article about something generally described as “Intra-operative Chemotherapy”, i.e. the administration of chemo during surgery.  This isn’t any old article – this is written by someone who is very well-known in Neuroendocrine Cancer circles – Dr. Yi-Zarn Wang.  Dr Wang has been working with neuroendocrine cancer patients at Ochsner-Kenner Medical Center in Louisiana since 2006.

The general idea behind this isn’t exactly new as there’s also a procedure known as HIPEC (Hyperthermic Intraperitoneal Chemotherapy) or “chemo bath”.  This is mostly used intra-operatively for people with advanced appendiceal cancers such as Pseudomyxoma Peritonei (PMP). It normally follows extreme surgery – you can read more about this in a blog I wrote at the beginning of the year entitled “The Mother of all Surgeries”.

However, this is both different and significant because it is targeted at midgut neuroendocrine tumour (NET) patients who are often diagnosed at an advanced stage with extensive mesenteric lymph node and liver metastasis. Despite extensive surgery which needs to be both aggressive and delicate, there can sometimes be small specks left behind which will not show up on any type scan, particularly in the mesentery area.  It is possible these specks could eventually grow big enough to cause fresh metastasis or syndrome recurrence/worsening and then need further invasive treatment.

The treatment aims to eliminate potential tumour residuals in mesenteric lymph node dissection beds using a safe and local application of chemotherapy agent 5-fluorouracil (5-FU). The 5-FU is delivered via ‘intraoperative application’ of 5-FU saturated gelfoam strips secured into the mesenteric defect following the extensive lymphadenectomy. The term ‘Chinese dumpings’ is used to describe the 5-FU saturated gelfoam strips once they are in place in the treatment site.  I understand from other research that they can also be used in liver surgery (anecdotal from a forum site).

The report concluded that those who were treated with the intra-operative 5-FU received less follow-up surgery than those who were not (the control group). However, it added that further studies were required to evaluate its effect on long-term survival.

So…. this form of intra-operative treatment is very interesting. Incidentally there is already a form of intra-operative treatment using radiotherapy (IORT) which is a similar concept but essentially still in its infancy. However, the first IORT machine of its kind in the UK was deployed in Jun 2016.  I blogged about this here.

You can read the report in full here:

Adjuvant intraoperative post-dissectional tumor bed chemotherapy—A novel approach in treating midgut neuroendocrine tumors

p.s. If you get time, the introduction section of this article is a very powerful explanation of the problems and challenges faced by surgeons when presented with extensive abdominal neuroendocrine disease.

My Diagnosis and Treatment History

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I’m still here

test of text on jpg

“I no longer pay any attention to prognostic statistics – I’m actually influenced by the large number of long term survivors I see out there”

Six years ago. I was diagnosed with metastatic Neuroendocrine Cancer.  Until my 5th anniversary last year, I hadn’t thought much about how (or if) I should mark these occasions.  I’ve concluded there doesn’t seem to be a right or wrong way to handle Cancer milestones which are frequently referred to as ‘Cancerversaries‘. Last year, I ended up settling for a ‘5 year’ celebratory blog. I didn’t think I would dwell on such things as ‘Cancerversaries‘ but I now totally get why many patients and survivors do.

There are various types of ‘Cancerversary’ that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will most likely handle it their own way – and that’s perfectly understandable.

Last year’s 5 year milestone was significant, mostly I suspect, because it’s a time period very frequently used in prognostic outcome statistics. When I was researching after my diagnosis, the 5 year figure for metastatic Neuroendocrine Cancer wasn’t that great, in fact it looked less favourable than certain more aggressive cancers. Then I gradually picked up that prognostic figures for Neuroendocrine Cancer appeared to be dated (like many other things) and did not take into account improved diagnostic techniques and the introduction of a plethora of new treatments, in particular somatostatin analogues.  I no longer pay any attention to prognostic statistics – I’m actually influenced by the large number of long term survivors I see out there.

My cancer is incurable but treatable and I will never call it terminal.  I’m still here and I intend to be here next year too!

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Sorry, I’m not in service

not in serviceADDENDUM – this blog was featured by Macmillan Cancer – check out this link.

ADDENDUM – this blog was featured by Cancer Knowledge Network – check out this link.

It’s good to be busy, it can take your mind off stuff you don’t really want to think about. That was my tactic after being diagnosed with incurable Neuroendocrine Cancer.  I just kept working and working and was still sending work emails and making telephone calls on the day I was being admitted to hospital for major surgery. After all, how could they possibly function without me? Although I was banned from work after the surgery, I still dropped an email to let them know I was doing cartwheels down the hospital corridor. They expected nothing less.

I guess the image of ‘invincibility’ was important to me at that time.  It was part of my personal expectations and credibility. Some 6 weeks after leaving hospital following a 9 hour open surgery, I literally crawled back to the office, weak and drawn but determined to ‘make a statement’ by dint of my physical presence. A round of applause was given and for me this was as effective as any medicine I was taking.  My credibility was intact.

Treatment, tests and consultations would now be managed around work instead of the other way – after all, they couldn’t possibly function without me?  This ‘charade’ went on for some time until I eventually realised they could actually function without me and the only person expecting me to be ‘in service‘ on a treatment, testing or consultation day, was me. Additionally, it became patently obvious that people would totally understand my reasons for slowing down. However, a more serious message was being received from my body which was hinting it was more delicate than I had thought. My credibility, until hitherto sacrosanct, was taking its toll and things weren’t really back to normal. I began to realise I needed a different and better ‘normal‘.

After my ‘eureka’ moment, I totally changed my lifestyle putting my health above my credibility in the ‘pecking order’.  I still keep busy – that’s important. I’m now happily doing things I enjoy at my own pace and my fatigue levels are now under control. Here’s my 5 top suggestions for prioritising your time and activities to be able to live with an incurable cancer.

  • Reduce your stress. This is difficult with the modern life we now lead but if you can live without things that cause you stress – cease or drastically reduce their effect on you and boldness might be required to strike the right balance.
  • Quality sleep. If your illness has a fatigue element, a decent night’s sleep becomes more important. Get into a routine if possible.
  • Take time to exercise. It doesn’t need to be a marathon or a climb up Mt Everest. Even a regular short walk is enough and you can build up from there.  This also helps with the sleep, fatigue and stress reduction.
  • Learn to say no more often. This is difficult, particularly if you are the energetic multi-tasking go-getter type but your body has a voice – listen to it.
  • Do more of the things you enjoy. We’re all guilty of procrastination from time to time but get more of the things you enjoy into your calendar, it supports all the other suggestions above!

I now have a new ‘normal’ and I feel healthier and more positive.  I sometimes think I might be taking on too much leading to a return to the ‘old ways’. However, the big difference today is that I have no qualms about taking myself out of service or reducing my workload and commitments. My body tends to remind me now and then.

Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption

This is the second blog in the Neuroendocrine Cancer Nutrition series. In Blog 1, I focussed on Vitamin and Mineral deficiency risks for patients. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It’s also worth pointing out that malabsorption issues can be caused by other reasons unrelated to NETs. Additionally, malabsorption and nutrient deficiency issues can form part of the presentational symptoms which eventually lead to a diagnosis of Neuroendocrine Cancer; e.g. in my own case, I was initially diagnosed with Iron Deficiency Anaemia. Even after diagnosis, these issues still need to be carefully monitored as they can manifest as part of the consequences of having cancer and cancer treatment.

Malabsorption will present via several symptoms which may be similar to other issues (i.e. they could masquerade as, or worsen, the effect of a NET Syndrome). These symptoms may include (but are not limited to) tiredness/fatigue/lethargy, diarrhea, steatorrhea (see below), weight loss.  Some of these symptoms could be a direct result of nutrient deficiencies caused by the malabsorption.

Crash Course……. We eat food, but our digestive system doesn’t absorb food, it absorbs nutrients.  Food has to be broken down from things like steak and broccoli into its nutrient pieces: amino acids (from proteins), fatty acids and cholesterol (from fats), and simple sugars (from carbohydrates), as well as vitamins, minerals, and a variety of other plant and animal compounds. Digestive enzymes, primarily produced in the pancreas and small intestine (they’re also made in saliva glands and the stomach), break down our food into nutrients so that our bodies can absorb them.  If we don’t have enough digestive enzymes, we can’t break down our food—which means even though we’re eating well, we aren’t absorbing all that good nutrition.

The malabsorption associated with Neuroendocrine Cancer is most prevalent with the inability to digest fat properly which can lead to steatorrhea. Patients will recognise this in their stools. They may be floating, foul-smelling and greasy (oily) and frothy looking. Many patients confuse steatorrhea with diarrhea but technically it’s a different issue although both issues may present concurrently. Whilst we all need some fat in our diets (e.g. for energy), if a patient is not absorbing fat, it ends up being wasted in their stools and in addition to the steatorrhea, it can also potentially lead to (unwanted) weight loss and micronutrient deficiencies of the fat-soluble vitamins A, D, E and K. Certain water-soluble vitamins, particularly B3 and B12, are also at risk. Steatorrhea issues can be addressed by prescribing enzyme replacement therapy (PERT) products as directed by your doctors or dietician (e.g. Creon etc).

Structoral Changes (i.e. Surgery) can play a very big part in malabsorption issues. For example, if a patient has undergone Pancreatic surgery, this will most likely effect the availability of pancreatic digestive enzymes needed to break down food. Many Small Intestine NET (SINET) patients will suffer due to the removal of sections of their ileum, an area where absorption of water-soluble vitamins and other nutrients take place.  In fact, the terminal ileum is really the only place where B12 is efficiently absorbed.  Low B12 will cause fatigue. Although a less common tumour location, jejunum surgery could result in loss of nutrients as this section of the small intestine is active in digestive processes. Malabsorption issues for SINETs are an added complication to the issues caused by a shorter bowel (e.g. increased transit times), something which is regularly assumed to be the effects of one of the NET Syndromes (particularly diarrhea and fatigue).

Another risk created by the lack of terminal ileum is Bile Acids Malabsorption (BAM) (sometimes known as Bile Salts Malabsorption). Bile Acids are produced in the liver and have major roles in the absorption of lipids in the small intestine. Following a terminal ileum resection which includes a right hemicolectomy, there is a risk that excess Bile Acids will leak into the large intestine (colon) via the anastomosis (the new joint between small and large intestines).  This leakage can lead to increased motility, shortening the colonic transit time, and so producing watery diarrhea (or exacerbating an existing condition). Although this condition can be treated using bile acid sequestrants, it is difficult to pinpoint it as the cause.

The Gallbladder plays an important part in the digestive system – particularly in fat breakdown. The liver continually manufactures bile, which travels to the gallbladder where it is stored and concentrated. Bile helps to digest fat and the gallbladder automatically secretes a lot of bile into the small intestine after a fatty meal. However, when the gallbladder is removed, the storage of bile is no longer possible and to a certain extent, neither is the ‘on demand automation’. This results in the bile being constantly delivered/trickled into the small intestine making the digestion of fat less efficient.  One of the key side effects of Somatostatin Analogues (Octreotide and Lanreotide) is the formation of gall stones and many Neuroendocrine Cancer patients have their gallbladder removed to offset the risk of succumbing to these issues downstream. Removal of the gallbladder also increases the risk of BAM as described above. Any issues with Bile Ducts can also have a similar effect.

The Liver has multiple functions including the production of bile as stated above. However, one of its key functions within the digestive system is to process the nutrients absorbed from the small intestine.  If this process is affected by disease, it can potentially worsen the issues outlined above.

Somatostatin Analogues can also impact (or worsen) the ability to digest fat as they inhibit the production of pancreatic digestive enzymes.  This is a well-known side effect of both Octreotide and Lanreotide.

The levels of the fat-soluble vitamins (ADEK) and B vitamins such as B12, need to be monitored through testing and/or in reaction to symptoms of malabsorption.  If necessary these issues need to be offset with the use of supplements as directed by your dietician or doctor. Supplements are less affected by malabsorption of nutrients but their efficiency can be impacted by fast gut transit times (thus why testing is important).  The evidence is here:   Click Here.

Deficiencies of these vitamins and certain minerals can lead to other conditions/comorbidities, some more serious than others. For a list of the vitamins and minerals most at risk for Neuroendocrine Cancer patients, have a read of my blog – Vitamin and Mineral deficiency risks.

There is a third blog in this series discussing a related issue with Neuroendocrine Cancer, particularly where gut surgery has been performed. You can link directly to this blog here  – “Gut Health” – (Gut Health, Probiotics and Small Intestinal Bacterial Overgrowth (SIBO)).

Blog 4 looks at Amines and why they can cause food reactions or exacerbate syndromes.

Again, I remain very grateful to Tara Whyand for some assistance. This is a big and complex subject and I only intended to cover the basics.  If you need professional advice, you should speak to your doctor or dietician.

Thanks for listening


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Neuroendocrine Tumours – not as rare as you think


Extracted from a slideshow published by Dana Farber here: http://www.slideshare.net/DanaFarber/finding-the-answer-to-net-cancer

Hold off on that Zebra tattoo

Neuroendocrine Tumours – incidence rising faster than all other cancers     (period 1973 – 2004)


Although initially considered rare tumours, recent data indicates that the incidence of NETs has increased exponentially over the last 4 decades and they are as common as Myeloma, Testicular Cancer, and Hodgkin’s Lymphoma.  In terms of prevalence, NETs represent the second commonest gastrointestinal malignancy after colorectal cancer.  In fact, this graph and other reports below indicate the rate of incidence is potentially rising faster than any other Cancer on the planet. The rise is mainly attributed to lung, small intestine, and rectal NETs.  However, since the World Health Organisation’s revised classification of Neuroendocrine Neoplasms in 2010, there would be a significant increase if this data exercise was run again. This is due to the abandonment of the division between benign and malignant NETs following the 2010 declaration that all NETs now have malignant potential and are graded accordingly.  The SEER data compiled below did not take into account benign NETs.

Incidence and Prevalence

Before I continue, it’s important to understand the difference between incidence and prevalence.  In the crudest of terms, incidence is the number of new cases of a disease being diagnosed (normally aligned to a specific quota of the population per year, generally 100,000). Prevalence normally indicates an amount of people living at any one time with a disease. It’s also important to note that different nations or groups of nations classify ‘rare’ in different ways – not really helpful when looking at worldwide statistics.

So why the increase?  I suspect the reasons include (but are not limited to), more awareness (population and medical staff), better detection techniques and probably more accurate reporting systems, at least in USA, Norway, Canada and now in the UK i.e. a mixture of underdiagnoses and misreporting.  The Canadian study is important as it also noted the proportion of metastases at presentation decreased from 29% to 13%. This is the first study that suggests an increased incidence of NETs may be due to an increased (and earlier?) detection. This has the knock on effect of increasing prevalence as most NET Cancer patients will normally live for longer periods.  Add to this the plethora of better treatments available today, you have a highly prevalent cancer.

However, their true incidence may be higher owing to the lack of diagnosis until after death.  For example, in USA, a respected NET specialist stated that the autopsy find for ‘carcinoid’ is 4 times the recorded diagnosis rate. In Australia, one study claimed that 0.05% of all autopsies found a Pheochromocytoma or Paraganglioma.

US SEER – The Trigger and Turning Point

In the largest study of its kind, well-known Neuroendocrine Cancer expert James C. Yao researched the Surveillance, Epidemiology and End Results (SEER) database. His team studied 35,825 cases of Neuroendocrine Cancers in the United States covering data between 1973 and 2004. The report concluded that in 2004 there were 5.25 new cases of NETs per 100,000 people, compared with 1.09 per 100,000 in 1973 [1]. This is in contrast to the overall incidence of malignancies, which has remained relatively constant since 1992 (see the yellow line on the graph). The study also pointed out that due to increased survival durations over time, NETs are more prevalent than previously reported. This is an astonishing set of statistics – particularly as they are based on data which is now 12 years old.  If you analyse the NET data for 1994 (10 years before the end of the study period), you will see an incidence rate of approx 3.25/100,000. In 2004, the incidence rate had risen to 5.25/100,000. Although not an exact science, it does suggest the potential incidence rate at 2014 (10 years after the study period) might possibly have climbed well beyond 6/100,000 and even further if the same rate of increase displayed by the study had continued. You can see evidence of this extrapolation in the diagram below which has been extracted from cited article 2a. This study also confirmed a prevalence of 103,000 NET patients as at 2004. As this is regarded as the most accurate NET statistic ever produced, it is interesting to note that was at a time when the prognostics for NET were not as good as they are today indicating there must be a very significant increase by 2017. Moreover, this was prior to the WHO 2010 reclassification of NETs so more diagnoses will be counted today that were not counted in 2004. See below to see the significance of this figure (see section ‘Do the math’).

Meanwhile in Norway ……

Data from the Norwegian Registry of Cancer showed a similar incidence of Neuroendocrine Cancers with a 72% increase between 2000 and 2004 compared with 1993–1997 [2]. Also in Norway, an article published in 2015 entitled “Epidemiology and classification of gastroenteropancreatic neuroendocrine neoplasms using current coding criteria” indicated a high crude incidence of GEP-NEN, at 5·83 per 100 000 inhabitants over the period 2003-2013 (adjusting to 7.64 for Europe in 2013 – see diagram below extracted from cited article 2a).  It was also noted together with the statement “….a significant increasing trend over time”. [2a] Citation [2b]
extrapolation europe

Meanwhile in Canada …….

CNETs have highlighted an article published in the magazine ‘Cancer’, February 15, 2015, showing that the incidence of Neuroendocrine Tumours has markedly increased in Canada over the course of 15 years (1994-2009). The results showed that the incidence of Neuroendocrine Tumours has increased from 2.48 to 5.86 per 100,000 per year. [3] [4]

Meanwhile in UK …….

The latest figures from Public Health England (PHE) indicate the incidence of NETs has risen to 8/100,000 using the latest International Classification of Diseases for Oncology (ICD-O) methodology version 3 – ICD-O-3 (i.e. not rare).  That means a new NET diagnosis every 2 hours. You can see a summary of the report here which is based on 8,726 cases:   NEW:  Public Health England release new incidence data for Neuroendocrine Cancer

Meanwhile in New Zealand …….

as presented by Unicorn Foundation NZ on 11 Mar 2017

Do the Math

So it seems that Neuroendocrine Cancer is not only the fastest growing cancer in incidence terms but as a group of cancers, it may no longer be considered rare in statistical terms if you roughly extrapolate the US SEER data graph above to 2015 and overlay the other studies quoted.  In fact, this picture below from Novartis US does have an extrapolation via a regression analysis of the SEER figures as at 2004 taking it up to what it might have been at 2013. You can see clearly from this chart that it goes way beyond the incidence threshold for rare status and there are a further 3 years to add to that. Although it says ‘Carcinoid’ I suspect they mean all NETs and this is part of the nomenclature confusion that still pervades the internet. Even if they only meant so-called ‘Carcinoid’ tumours, this would increase the incidence even further than shown below.


Go figure

Whilst reporting has been improved, it is clearly still not 100% accurate. Therefore, even the figures above may be understated due to an incorrect cause of death reporting and incorrect diagnosis/recording of the wrong cancers (e.g. pNETs recorded as Pancreatic Cancer, Lung NETs recorded as Lung Cancer, etc).  This is certainly still happening in UK and I suspect in most other countries. Add to that the regular reports of Neuroendocrine Tumours being found during autopsies and you have the potential for an even further unrecorded increase had these been found prior to death.

The issue is also complicated by the method used in USA for naming a disease ‘rare’. Rather than use incidence rates, the USA uses the number of people living with the disease at any one time (i.e. essentially the prevalence). This is currently 200,000 as a threshold – anything below that is considered rare.

The top graphic is an extract from a slideshow published by Dana Farber.  You will see they cite the “greater than 100,000” figure; and they also estimate an annual incidence of 16,000.  This seems a very conservative figure most likely based on the 5/100,000 incidence rate from 2004….. (i.e. it’s out of date).

When I first started researching NETs back in 2010, the US figure (which varies from source to source) was around 125-150,000.  Why are people quoting figures less than this in 2017?

You will also see that Dana Farber is estimating more than 200,000 people are as yet undiagnosed.  Even if that were 50% accurate, it would put the current prevalence figure in US over 200,000 – ergo NOT RARE.

Let’s cut to the chase – NETs are not rare, they are just less common

Are we shouting loud enough about this?  I don’t think so.  ‘Rare’ is very frequently used within our community almost to the point of being a status symbol (not sure why – to be rare is to be ignored).  Based on these figures, this looks like an outdated approach along with its associated icons. Statistically, rare cancers don’t normally do well in comparison to the more common types and they certainly don’t attract the same resources and research.

“A neoplasm on the rise.  More prevalent than you may think.  Incidence increased dramatically during past 3 decades” (Novartis)

“it’s less rare than we used to think. It’s more malignant than we previously thought” (Dr Richard Warner)

“…..it is one of the most rapidly increasing cancers in the U.S. There has been a 500-percent increase in the last 30 years” (Dr Edward Wolin)

“Estimated more than 200,000 undiagnosed cases in the US” (Dana Farber)

“Neuroendocrine Cancer – it’s not rare, it’s less common.  We should be talking more about this” (Ronny Allan)

Thanks for reading


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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


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