Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

 

This is the second article in the Neuroendocrine Cancer Nutrition series. In  the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. 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 presenting symptoms which eventually lead to a diagnosis of Neuroendocrine Cancer; e.g. in my own case, I was initially diagnosed with Iron Deficiency Anemia in association with some weight loss. 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 appear to worsen the effect of a NET Syndrome). These symptoms may include (but are not limited to) tiredness/fatigue/lethargy, stomach cramps, diarrhea, steatorrhea (see below), weight loss. Some of these symptoms could be a direct result of nutrient deficiencies caused by the malabsorption.  Some patients (and perhaps physicians?) could mistake these for symptoms of Neuroendocrine disease including certain syndromes, perhaps leading to prescribing expensive and unnecessary drugs when a different (and cheaper) strategy might be better.

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.

What is malabsorption?

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. Many NET Patients are prescribed a supplement of pancreatic enzymes to combat these issues – see Article 5 in this series – Pancreatic Enzyme Replacement Therapy (PERT).

What causes it with NET Patients?

Structural Changes (i.e. Surgery) 

This 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 (SI NET) 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 is known to cause fatigue.  Some patients with Gastric tumours succumb to pernicious anemia with the most common cause being the loss of stomach cells that make intrinsic factor. Intrinsic factor helps the body absorb vitamin B12 in the intestine. 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 SI NETs are an added complication to the issues caused by a shorter bowel (e.g. faster transit time), something which is regularly assumed to be the effects of one of the NET Syndromes (particularly diarrhea and fatigue), when in actual fact, it’s a simple consequence of cancer treatment and may need a different treatment regime.

Evidence of the problems being caused by the effects of small intestinal surgery can be found in a recently published Swedish study which you can read here: Click here. This particular study recommends supplementation of B12 and D3 for those affected.  If you’re having trouble getting your physician to monitor your vitamin levels, show them these studies. I get these vitamins checked annually.

The Gallbladder and Liver

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. However, the removal of the gallbladder increases the risk of Bile Acid Malabsorption (BAM) as described below. 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.

Bile Acids Malabsorption

Another risk created by the lack of terminal ileum is Bile Acids Malabsorption (BAM) (sometimes known as Bile Salts Malabsorption and some texts described the resultant diarrhea as ‘Bile Acid Diarrhea”). 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).

Somatostatin Analogues

Somatostatin Analogues can also impact (or worsen) the ability to digest fat as they inhibit the production of pancreatic digestive enzymes (amongst other things). 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 and recommendations for malabsorption caused by somatostatin analogues is here: Click Here.  

Overlapping Areas

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 article which was co-authored by Tara Whyand – Vitamin and Mineral deficiency risks.

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

The fourth article  looks at Amines and why they can cause food reactions or exacerbate syndromes.

Many people also confuse steatorrhea with diarrhea (although these issues can appear simultaneously), again leading to wrong conclusions about the causes and effects, and worryingly, the treatment required. Check out my diarrhea article – click here.

Article 5 in this series looks at how to combat malabsorption caused by pancreatic insufficiency – Pancreatic Enzyme Replacement Therapy (PERT)

My article ‘The Diarrhea Jigsaw’ is complementary to this nutrition series.

Read a Gut Surgery Diet Booklet authored by Tara – CLICK HERE

Summary

A common problem in patients and from what I see, many just assume this is part of their various syndromes leading to the wrong therapy or no therapy as it’s simply ignored. 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.  Everyone is different and nothing in here should be accepted as medical advice for you or anyone you know.  If you need professional advice, you should speak to your doctor or registered dietitian.

Thanks for reading

Ronny

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Surgery – the gift that keeps on giving

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As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with ‘debulking’ surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage.  Another term used at the time was ‘cytoreductive’ surgery which means ‘to control symptoms and improve survival by removing or destroying disseminated tumour metastases’.  Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation.  I’m still alive and kicking and don’t feel too bad at all!

The 9 hour operation was planned to debulk what was described as “extensive intra-abdominal neuroendocrine disease” and was first of a number of visits to an operating theatre.  The surgeon removed 3 feet of small intestine at the terminal ilium plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction.  With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava (almost occluding the latter).  This was a risky procedure but 270º clearance was achieved. Although it was known I also had liver metastases and some distant ‘hotspots’, those were to be tackled at a later stage.

I left the hospital some 19 days later and was delicate for some weeks after that.  I don’t recall what the plans were for Christmas Day that year but everything was changed so that it could be hosted at home organised by my ‘right-hand’ woman – Chris.  It was a good plan, as I just wouldn’t have been able to go elsewhere and it was the best gift I could hope for that year. My 3 grandsons  (I have 4 now !) were under strict orders not to jump on me – I had a 12 inch north to south wound still healing! However, I suspect the youngest who was not yet 2 years old at the time, didn’t really understand 🙂  I do have priceless grandchildren!

Not long after the present exchanging and the meal, I was so exhausted that I laid down and fell asleep immediately as a hint that I should be left alone for a bit!   I thoroughly enjoyed the day and it functioned as a medicine along with the many others I was taking at the time. The whole day reminded me that I have a lot to live for, so I’m thankful for the surgery.  

 

Thanks for reading

Ronny

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Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

The papers and social media seem to be full of awareness and early diagnosis articles this month.  This coincided with world NET Cancer Day on 10 Nov and world Pancreatic Cancer day on 13 Nov.  Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types.  These issues also made it to the conventional media outlets of newspapers, radio and television.  Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of Pancreatic Cancer and I was struck by the similarities with NET Cancer. However what really caught my ear was Ali saying how important it was for individuals to think whether the symptoms they were experiencing were unusual for them.  Great advice and a reminder that the patient has a duty to help in their own diagnosis.   Ali also said to insist on seeing a doctor again if you felt something was still not right after the first visit.  Again, excellent advice on the basis it appears to have saved her life.   Click here for Ali’s interview

One other major story which caught my attention was the statement from NICE (National Institute for Health and Care Excellence) that they intend to update their guideline document “Suspected cancer: recognition and management of suspected cancer in children, young people and adults”.  The statement followed news of research which indicated up to 10,000 people in England could be dying each year due to late diagnoses. This research cited the reasons why cancer diagnoses may be missed and these included the fact that over 200 different types of cancer exist, each with different symptoms, and that patients present at their GP with symptoms which are non-specific.  Does that sound familiar to NET Cancer patients?

I found the NICE statement very interesting because in the 4 years I’ve been studying NET Cancer, I’ve never heard of these guidelines so thought I’d take a look.  No surprises that NET Cancer (or more specifically, Neuroendocrine Tumours or Carcinoid) was not mentioned as a condition.  I searched the entire 405-page document using the search terms ‘Neuroendocrine’, ‘Carcinoid’ and ‘flushing’ and only turned up a single reference to ‘Neuroendocrine’ within the children’s cancer section under Neuroblastoma.

The guidelines are constructed to look at cancer in terms of anatomy so I, therefore, looked at the most common place for a NET cancer – the small intestine.  Good time to refresh my view on this by reading blog post The Anatomy of NET Cancer. I was happy to find a section on cancers of the small intestine which it defines as “a rare cancer of the duodenum, jejunum or ileum, with different histological subtypes. Most GPs will not diagnose a case during their career. The rarity of this cancer means there are no relevant studies of its clinical features. It may have symptoms similar to those of stomach or colorectal cancers. The main method of diagnosis is by biopsy, which is performed in secondary care.”   That got me thinking that the target area for NET Cancer awareness campaigns in the UK might need to be focussed more on secondary rather than primary care?  Food for thought?

I then found a non-anatomy based section further on entitled “Recommendations for specific symptoms and signs” which then cross references to the potential cancers involved.   I was hoping to find something in there so I searched on the most common symptom of Carcinoid Syndrome (in most cases indicating an advanced carcinoid tumour) but there was no sign of the most common symptom of the most common type of NET Cancer.

It’s fantastic that NICE is updating its guidelines to provide the latest clinical and best practice advice to GPs.  I also read that they are encouraging GPs to refer more people to secondary care as another way of tackling the late diagnosis issue (particularly important for NET Cancer patients when you consider the NICE guidelines above) – see BBC News article 

It’s right that the more prevalent and more aggressive cancers be included as a priority in the NICE guidelines but NET Cancer is a notoriously misdiagnosed condition and people do die of this disease.  Additionally, many people have to live with a reduced quality of life due to the symptoms and side effects and this comes at great cost to health providers.  Perhaps the incidence rate of NET Cancer is still not high enough to merit mention in the NICE guidelines. Or perhaps there is still a general ignorance of these types of cancers in the ‘medical establishment’?

You can see a copy of these guidelines here although I suspect only UK-based patients will be really interested. Personally, I feel there could be a section specifically on Neuroendocrine Tumours as there are for other ‘systemic’ cancer types, perhaps with cross references to the various anatomy based sections in the document.  Consequently, I’ve emailed NICE asking if there is anything in the pipeline to include guidance on NET Cancers and I urge UK-based patients to do similar – their email is: nice@nice.org.uk

NET Cancer patients and their advocates have been pushing and pushing for more recognition and it appears in the UK, this will go on for some time. Whilst I recognise the positive moves above, it’s important that both primary and secondary care medical staff are alerted to the symptoms of NET Cancer and are able to spot these at an earlier stage.

NET Cancer patients need an early diagnosis, not early misdiagnosis!

Thanks for reading

Ronny

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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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