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Neuroendocrine Cancer Nutrition Blog 1 – Vitamin and Mineral Challenges


Vitamins & minerals

Vitamins & minerals – the biggest QoL challenge for NET Patients?

Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I’m happy about that! However, it eventually became clear that the impact of this constant treatment/controlling, meant that some of the less obvious signs of nutrient deficiency were potentially being missed.

This is one of the key reasons I believe there is a gap in specialist follow on support for Neuroendocrine Cancer patients – at least in the UK. As I said in blog post ‘I may be stable but I still need support, Neuroendocrine Cancer patients need specialist dietary and nutritional advice covering a much wider spectrum than most cancer patients. In this blog, I also suggested that there does not appear to be enough research into these issues leaving many patients working out their own strategies post diagnosis and treatment.  However, I was delighted to see a study published in 2016 indicating a recognition of this problem.  The paper (click here), which was sponsored by ENETS Centres of Excellence (CoE) in UK, concluded that “Given the frequency of patients identified at malnutrition risk using MUST (malnutrition universal screening tool) in our relatively large and diverse GEP-NET cohort and the clinical implications of detecting malnutrition early, we recommend routine use of malnutrition screening in all patients with GEP-NET, and particularly in patients who are treated with long-acting somatostatin analogues”.  This amplifies the advice Tara has given many NET Patients in UK that regular blood checks of key vitamins at risk, particularly B12 and the fat-soluble ADEK (see more on this below).  Even those patients with very healthy diets can still succumb to these issues. Looking at the vast number of forum posts on this subject, perhaps this is also a problem outside of UK?

This is not just about what foods to avoid or eat in moderation, this is also about:

a. receipt of post surgical/treatment advice,

b. early knowledge and countermeasures for the side effects of ongoing and long-term treatment,

c. the intelligent use of supplements where they are applicable,

d. how to combat, treat or offset malabsorption and nutrient deficiencies caused by the complexities of their cancer and any treatment given.  Check out Blog 2 in this series which specfically looks at Malabsorption.  

e. how to deconflict these side effects with those of the various syndromes which can sometimes accompany Neuroendocrine Cancer.

In early 2011, shortly after my first major surgery and commencement of my monthly somatostatin analogue – Lanreotide (Somatuline), I started to notice a number of issues developing. I carefully searched for clues and I could see that some of my issues pointed to side effects from treatment (both from surgery and somatostatin analogues) and potentially some vitamin and mineral deficiencies. I had already been taking an ‘over 50‘ multivitamin tablet for some time before I was diagnosed and assumed I was already covered. Having analysed the issues I was experiencing at the time, I was specifically targeting B12 and my initial test score was just in range (i.e borderline). Surprisingly my multivitamin B12 content was 400% RDA – yet my blood test was borderline. That might explain the fatigue!

I later attended a fantastic patient day where I was introduced to the UK’s solitary Neuroendocrine Cancer specialist dietician. This subject was a revelation for me and I was alerted to the possibility that other vitamins and minerals could be at risk due to a combination of surgery and/or treatment, in particular the fat soluble vitamins A, D, E, K. Following a hastily arranged series of blood tests, I found my Vitamin D was insufficient and this has now been resolved through additional supplementation and more effort to absorb it through conventional means (i.e. the sun!).

I’m now on top of this issue through learning, understanding and basically becoming my own advocate. Please note this is a massive subject and the amount of information on the internet can be overwhelming.  Additionally, it is not an exact science and not everything will apply to every person.  Personally I would stick to sites where the advice is given by a nutritionist/dietician who is also experienced with Neuroendocrine Cancer.

I’m thankful to Tara Whyand who is an Oncology Dietician specialising in Neuroendocrine Cancer at the Royal Free Hospital.  Her research, advice and raising of these issues at patient meetings has been invaluable. As the only specialist in the UK (that I know of), she gets a lot of queries!  If you’re on twitter, you can follow Tara here:

https://twitter.com/LadyNourish

Even though I’ve had to limit this post to vitamin and mineral issues, it’s still much larger than what I normally produce.  Consequently, I’m planning further blogs on associated and overlapping subjects.

In the meantime, I’m very grateful to Tara for the input below:

——————————————————————————————–

NET Patients are at Risk of Deficiencies

Over the past few years I have become more aware of vitamin and mineral deficiencies in NET patients, and the impact these can have on health and quality of life. When the focus of NET treatment is on eradicating and controlling the disease, the impact on nutrition, apart from obvious weight loss, means less obvious signs of micronutrient deficiency can be missed. Below is a list of nutrients which are those most at risk of becoming low enough to cause problems. It is important that the treatment of these deficiencies is discussed with your NET team so they can prescribe suitable doses.

Minerals

Magnesium

Magnesium blood tests are an unreliable measurement and there is no way of accurately measuring body stores.

Magnesium is a vital mineral required for the function structure of the human body. Prevalence of low blood magnesium levels varies from 7% to 11% in hospital patients and clinical magnesium deficiency is frequently observed in conditions causing steatorrhoea or severe chronic diarrhoea, and the degree of magnesium depletion correlates with the severity of diarrhoea and stool fat content. Signs of deficiency include low energy, fatigue, weakness, PMS, menstrual cramps, hormonal imbalance, insomnia, bone mineral density loss, muscle tension, spasms, cramps, cardiac arrhythmia, headaches, anxiousness, nervousness and irritability. If you think you could be deficient you must ensure you consume enough magnesium (375mg per day).

Zinc

Zinc levels are best measured using a combination of blood serum and urinary excretion levels.

Zinc affects the human body through a large number of channels affecting not only cell division, protein synthesis and growth, but also gene expression and a variety of reproductive and immunologic functions. Zinc deficiency is common in undernourished patients. The absence of sufficient levels of zinc in the human body is associated with a large number of adverse health outcomes, including lower immunity, alopecia, tiredness and impaired wound healing. If you are at risk of deficiency make sure you consume enough zinc (10mg per day). If you are clinically deficient your diet must be supplemented.

Iron

Iron deficiency (hypoferremia) and clinical iron deficiency anaemia is easily measured with a simple blood test.

Iron is essential for the formation of haemoglobin in red blood cells which binds oxygen and transports it around the body. Iron is also an essential component in many enzyme reactions and has an important role in the immune system. In addition, it is required for normal energy metabolism and for the metabolism of drugs and foreign substances that need to be removed from the body. Lower iron levels are common in NET patients and there may be several causes of this. Poor iron intake, dietary iron absorption-regulating factors (e.g., vitamin C and copper) or iron distribution factors (e.g. vitamin A), are believed to be causes. Patients may also lose iron due to blood loss from the bowel in intestinal or rectal NETs or after surgery. It may also be possible that diarrhoea in NETs causes malabsorption of iron in the intestine too. Symptoms include tiredness, paleness, thinning hair, impaired immunity and feeling breathless. If you are at risk of having lower than normal iron levels you must consume enough iron (14mg per day). If you are clinically deficient your diet must be supplemented.

Copper

Diagnosis of copper deficiency is based on low serum levels of copper and ceruloplasmin, although these tests are not always reliable.

Copper is an essential trace mineral that is required for human health. This micronutrient is necessary for the proper growth, development, and maintenance of bone, connective tissue, brain, heart, and many other body organs. Copper is involved in the formation of red blood cells, the absorption and utilization of iron and the synthesis and release of life-sustaining proteins and enzymes. These enzymes in turn produce cellular energy and regulate nerve transmission, blood clotting, and oxygen transport. Copper stimulates the immune system to fight infections, to repair injured tissues, and to promote healing. Copper also has an antioxidant effect against oxidative stress.  Gastrointestinal surgery can lead to malabsorption of copper and other micronutrients. Long term malabsorption of food from the gastrointestinal tract can also lead to copper deficiency which puts many more NET patients at risk.  Symptoms of deficiency include neutropenia, impaired bone calcification, myelopathy, neuropathy, and hypochromic anemia not responsive to iron supplements. If you are at risk of lower than normal levels of copper you must consume enough (1mg per day). If you are clinically deficient your diet must be supplemented.

Selenium

Selenium levels are measured using plasma selenium blood tests.

Selenium is an essential micronutrient in humans and functions in many biochemical pathways. Proposed antioxidant pathways of selenium, include the repair and prevention of oxidative damage, alteration of metabolism of carcinogenic agents, regulation of immune response and repair of DNA damage. It works alongside vitamin E and selenium levels are often low during cancer and in patients on long-term intravenous nutrition.  Symptoms of deficiency include muscle pain and tenderness.  Everyone is required to have 55 µg a day and if you are clinically deficient your diet will need to be supplemented.

Water Soluble Vitamins

B1-Thiamine

Thiamine is not usually tested as diagnosis is based on symptoms and a trial of thiamine supplementation. If a doctor is unsure, they will measure erythrocyte transketolase activity and run a 24-hour urinary thiamine excretion.

Vitamin B1, or thiamine is an essential B vitamin which is required for the breakdown of sugars and amino acids. Absorption of thiamine is greatest in the jejunum and ileum, but it is it is inhibited by alcohol consumption and by folic acid deficiency. The most common cause of deficiency is alcoholism, although states causing malabsorption such as gastrointestinal surgery are also a factor. It may also be possible that diarrhoea causing malabsorption of nutrients from the intestines could put a patient at NET patient at risk of deficiency. Symptoms initially include fatigue, irritability, poor memory, sleep disturbances, anorexia, and abdominal discomfort. When more severe it involves hospitalisation due the effects on the nervous system and heart.

Patients who are at risk of deficiency must consume enough thiamine (1.1mg thiamine per day). Patients who are deficient must have their diet supplemented.

B3-Niacin

Niacin is not usually tested but may be useful to confirm diagnosis using urinary excretion of N 1 -methylnicotinamide (NMN).

Niacin also refers to both nicotinamide and nicotinic acid and is required as part of the way energy is produced by the body.  When carcinoid tumours produce hormones such as serotonin, these patients suffer from carcinoid syndrome. These are symptoms such as flushing, diarrhoea, wheezing and damage to heart valves (carcinoid heart disease). When the tumours make large amounts of serotonin, the amino acid, tryptophan, gets used up. When tryptophan stores are low it cannot be converted into the vitamin niacin, which may then cause deficiency. In a NET study, 28 per cent of patients with gastroenteropancreatic /carcinoid tumours and carcinoid syndrome were niacin deficient. Patients without carcinoid syndrome did not have niacin deficiency.  Niacin deficiency can also be caused by cirrhosis and diarrhea. Niacin deficiency leads to pellagra, the typical symptoms of which are diarrhea, dermatitis and dementia. All patients with carcinoid syndrome must take a nicotinamide containing supplement to treat and prevent this deficiency and it is a good idea to get enough niacin if you are at risk of deficiency for other reasons (approximately 40mg nicotinamide a day). Niacin or niacinamide may cause flushing!

B6-Pyridoxine

Vitamin levels are not usually tested but measurement of serum pyridoxal phosphate is most commonly used.

Vitamin B6 comprises 3 forms: pyridoxine, pyridoxal and pyridoxamine, and has a central role in the metabolism of amino acids. It is involved in the breaking down of glycogen into glucose. In addition, vitamin B6 plays a key role in metabolism of neurotransmitters, such as dopamine and serotonin, and it ensures efficient functioning of the immune system and making of red blood cells. The symptoms of vitamin B6 deficiency are local inflammation of the skin and dysfunction of the nervous system. Some NET patients may be at risk of deficiency due to malabsorption in the intestines and undernutrition.  If you are worried you may have lower levels make sure you consume enough (1.4mg per day). If you are deficient you diet must be supplemented.

B9-Folate

Serum folate reflects folate status unless intake has recently increased or decreased.

Folic acid is the synthetic form of folate. It is used in supplements and for food fortification. Folate functions together with vitamin B12 to form healthy red blood cells. It is also required for normal cell division and the normal structure of the nervous system.  It is possible to become deficient in folate due to malabsorption of nutrients in the intestine through diarrhoea and other malabsorption states such as surgery. If you are worried you may be at risk of deficiency ensure you get enough folate/folic acid (200 µg per day). If you are deficient your diet will need to be supplemented.

B12-Cobalamin

Vitamin B 12 must be measured alongside complete blood count and folate levels.

Cobalamin plays a role in DNA synthesis and regenerates methionine for protein synthesis. Low vitamin B12 levels have been observed in NET patients receiving somatostatin analogues and therefore monitoring of vitamin B12 levels is important during long-term therapy. Vitamin B12 deficiency has also been found to be common in type 1 gastric carcinoid NETs after Antrectomy and/or Gastrectomy. Patients with diseased or surgically removed ileums (end of the small bowel) and those who have bacterial overgrowth in the area are also at risk of Vitamin B12 deficiency. In addition, patients with insufficient pancreatic enzymes are also at risk of vitamin B12 deficiency as they play a key role in the steps before absorption occurs. If you are worried your levels may be low you must consume 2.5µg a day. If you are clinically deficient your diet must be supplemented, usually with regular injections.

Fat Soluble Vitamins

A, D, E and K

Somatostatin Analogues (Octreotide and Lanreotide) based injection treatments for a variety of NETs may cause deficiencies in some vitamins. This is because they may alter absorption of dietary fats which contain vitamins. Enzymes are usually released from the pancreas to break down nutrients such as fat, but pancreatic enzyme release can be reduced when somatostatin analogue medications are given.  When fat is not broken down properly, stools become pale/yellow, loose, greasy, foul-smelling or frothy and floating –‘steatorrhoea’. Your precious vitamins therefore end up in your toilet instead. One study followed 54 patients, who mostly had carcinoid tumours and were on somatostatin analogues for at least 18 months. It found that only one fifth of patients had visible steatorrhoea, but 6% were deficient in vitamin A, 28% deficient in D, 58% in E and 63% in K1. This shows that even if you don’t have visible signs of steatorrhoea, you may still be deficient in one or more vitamin!

A-Retinol

Serum retinol blood tests are the means of measuring vitamin A in the body.

Vitamin A is a fat soluble vitamin absorbed through the small intestine either as retinol or carotene, and then converted to retinyl palmitate which is stored in the liver. Normally the liver contains a 2 year store of vitamin A. Vitamin A deficiency has a wide range of ocular manifestations including conjunctival and corneal xerosis, keratomalacia, retinopathy, visual loss, and nyctalopia, or night blindness, which is the earliest and most common symptom. If you are worried about having low levels make sure you consume enough (800 µg per day). If you are deficient your diet will need to be supplemented.

D 3 –cholecalciferol

Your 25(OH)D levels can be measured with a simple blood test.

Cholecalciferol is a nutrient and hormone. Recent evidence for the non-skeletal effects (those apart from bone mineralisation) of vitamin D, coupled with recognition that vitamin D deficiency is common, has revived interest in this vitamin. Low vitamin D levels are linked to higher rates of several other cancers. Vitamin D is produced by skin exposed to ultraviolet B radiation and obtained from dietary sources, including supplements. Persons commonly at risk for vitamin D deficiency include those with inadequate sun exposure, limited oral intake, or impaired intestinal absorption from the diet (as above). The most recent evidence actually points out that the sun is not to be relied on as a source of vitamin D and oral intake is important. If you are worried you may have low levels you must speak with your doctor to arrange supplementation with or without a test.

E- α-tocopherol

Vitamin E can be tested by looking at the α-tocopherol level or ratio of serum α-tocopherol to serum lipids.

Vitamin E is a powerful antioxidant that can be regenerated by vitamin C after oxidation in the human body. It prevents damage of polyunsaturated fatty acids in cellular membranes. Signs of deficiency include dry skin and neurological symptoms. If you think you may have low levels make sure you consume enough (12mg per day). If you are deficient your diet will have to be supplemented.

K- Phylloquinone

Vitamin K deficiency can be measured by looking at the prothrombin time.

Phylloquinone is required for blood clotting and deficiency results in bleeding. Since this deficiency is common in patients with fat malabsorption due to severe liver disease and somatostatin analogue treatment it is important that you consume enough (75 µg per day). If you are clinically deficient you will need to receive supplementation.

Summary

Of course these are only the nutrients which are at risk of deficiency, there are many other nutrients and botanical extracts which may help patients with NET’s. It is vital that nutrition is considered for every patient with a NET and we hope one day each NET unit will have NET Specialist Dietitian to make this possible.


Here are some links to the other nutrition blogs:
Blog 2 – Gastrointestinal Malabsorption.  Overlapping slightly into Blog 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Blog 3 – Gut Health.  This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discussed probiotics.  Input from Tara Whyand.

Blog 4 – Food for Thought.  This is a blog about why certain types of foods or particular foodstuffs can cause issues.

Very grateful to Tara for the input.

Other useful links which have an association to this blog:

{a} Read a Nutrition Booklet co-authored by Tara – CLICK HERE

{b} Follow Tara on Twitter – CLICK HERE

{c} Watch a video of Tara presenting to a group of NET Patients – CLICK HERE

{d} Now Watch Tara answering the Q&A from patients – I enjoyed this – NET patients are very inquisitive! CLICK HERE

Thanks for listening

Ronny

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Surgery is risky but so is driving a car


surgeryI enjoyed reading the recent blog written by Dr Eric Liu entitled The Complications of Surgery.  In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks and patients should be made aware and able to discuss these risks with their doctors.

This got me thinking about my own experience which goes back to the autumn (fall) of 2010 when I first met my surgeon.  At that time, there were a few articles about whether surgery or biochemistry was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs).  NETs are not that much different to other Cancers in this respect – there is always a balance between maximizing QoL and extending life.  I was very lucky that I lived on the south central coast of England because the local Neuroendocrine Cancer expertise was (and still is) one of the best in the country.  After initial diagnosis, I was followed up with more specialist tests and then offered multimodal treatment including surgery. The risks of surgery were always fully explained to me – in any case I had to sign the consent forms where they were listed!  Not sure why but I couldn’t help laughing (probably nervously!) when I noted that ‘death’ was one of the risks.  It didn’t put me off and I told him to “get on with it”.

What also caused me to smirk was my surgical labelling as a “young, slim and fit man”. I was then 55 years old, slightly heavier than I thought I should be and although I had been fit for most of my life, I wasn’t that fit at the time of diagnosis. However, my surgeon was clearly doing his own risk assessment and I seemed to tick all the boxes to be able to withstand what was to be a fairly rigorous 9 hours on his table.  However, it was clear to me that age, weight/BMI and level of fitness are risk factors for surgery.

riskI don’t want to get too deep into the moral and ethical dilemmas faced by surgeons but Dr Liu’s very honest blog and my own patient experience, highlights the need, not only for a two-way conversation between surgeon and patient, but also the need for informed consent.

I clearly survived but to be honest, it was a tough period.  During my first major operation, some risks were realised resulting in a much longer stay in hospital and some effects are still present today.  The planned 10 day stay was extended to 19 due to a suspected infection (elevated white blood cell count) and a post operative seroma (a pool of ‘liquid’) which was causing some pain. The white blood cell count eventually settled down but for the post operative seroma, I was subjected to a CT guided needle aspiration which was great fun to watch 🙂 Fortunately for this short notice and risky procedure, I was in the hands of one of the best Interventional Radiologists in the country.  Some six weeks after discharge, a follow-up scan spotted Pulmonary Emboli (blood clots) on one of my lungs and I’ve been on blood thinning treatment ever since. I returned to the same surgeon’s table 4 months later for a liver resection using laparoscopic techniques (keyhole). Again the risks were explained but it was a breeze and I was home after 6 days.

Yes, surgery comes with risks – sometimes they are realised, sometimes they are not.  Action planning to counter the common risks if realised is no doubt sensible (and I suspect already part of surgical procedures and training). However, as Dr Liu says, there can be unforeseen circumstances in the course of the operation and recovery.

Almost 5 years on from diagnosis, I’m certain the two major surgeries have played a big part in keeping me alive and as well as can be expected.  For me surgery remains the The Gift that keeps on Giving.  If you have time, I also published a blog Surgery for NETs – Chop Chop! which contains links to surgeons talking about surgery for Neuroendocrine Cancer.  There are also links to some surgical videos – I personally found them fascinating.

Dr Liu’s blog can be read here – The Complications of Surgery

Thanks for listening

Ronny

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I may be stable but I still need support and surveillance


cancer-patient-supportRecently, I produced a blog post Stable is my new normal.  In that post, I emphasised that it’s important to understand that ‘Stable‘ for many Neuroendocrine Cancer patients does not mean cured – nor does it mean any kind of remission, particularly in metastatic cases. It simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time.

However, with incurable but treatable cancers such as metastatic Neuroendocrine Tumours (NETs), ‘Stable‘ is normally not the end of the matter, there is still a long road ahead and that road may not be straight or flat.  The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal.  The tumour surveillance must continue in case of a recurrence. 

One of the disadvantages of ‘incurable but treatable’ is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if ‘NET centred’ treatment, surveillance and professional support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’.  I also believe expectations need to be managed but improvements are still possible.  In my own experience, however, this does not happen overnight. Patient must be willing to accept a new normal or status quo.

What is stable for me?

Looking at my medical documents, I was not really considered ‘stable’ until 2 years after diagnosis. The measure of that is in scans and markers.  Nothing has grown since 2012 although I have a thyroid lesion being tracked on watch and wait.  My key NET markers have been solidly in range since 2012.  Today, my on-going monthly treatments are well organised, I’m in touch with my specialists and undergo several surveillance checks beforehand every 6 months currently. I get regular/normal illnesses and those are logged in my diary to look for any clues or associations with anything else. In between consultations, I can call in for urgent help if need be. Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated.  I feel well, I look well, I think I’m on top of things.

I think the UK (for example) is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Specialist Nurse – some areas are better served than others. In my opinion, NET Nurses can prove invaluable in on-going care scenarios.  In fact, I was very pleased to see a NET Nurse attending and taking a greater role in my most recent MDT meetings.  I’m fairly certain other countries have similar setups.  Some countries may not be so fortunate and are struggling to get the right resources – I can see this on one or two ‘corporate’ Facebook and Twitter sites. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more!

OK …  I may be stable but I still need support!

However ……. my stability does NOT mean I’m complacent.  For minor issues, it’s always useful to talk to a medical professional, even on the telephone. I think of my GP (PCP) as a ‘virtual’ member of my Multi-Disciplinary Team (MDT) and I copy them into any important correspondence between myself and my Oncologist.  They are normally copied in coming the other way (if not I make sure they are). This is starting to return dividends. Whilst my GP is positioned to deal with most of my ‘irritants’, I still believe specialist assistance is required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection. Being your own advocate is useful in these scenarios.  Patient-doctor communication is vital and I find it best to drive this myself. I’m lucky to have direct ‘as and when’ contact a specialist NET Nurse.  All NET patients should have the same.

Although I still need constant surveillance, being stable allows me to focus on QoL and in particular trying to improve on my ‘normal’.  Although I read a lot on forums, I don’t necessarily rely on them a lot for my own issues. On sporadic one-off forum questions (…..and not forgetting that hundreds of symptom questions are related to ‘the gut’), the discussions can end up with many different and confusing answers. Plus there are so many patients who are at varying stages of their disease, use different types of healthcare systems, have had different treatments and have different types of NET, it can end up as a tangled mess as people try to compare apples with pears.

I like to do my own research as I want to be in control of my own QoL.  One of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e. managing the gut). For many NET patients, particularly those who have had surgery and/or persisting syndrome, diet and nutrition is a  huge challenge as it can very often mimic other problems which can present with a wide range of ‘syndrome like’ symptoms such as fatigue, weight issues and even anxiety. More somatostatin analogues and other drugs might just be the wrong response in certain scenarios. I feel there is a huge gap in the follow-up treatment for people who suffer this as a consequence of their cancer. For example, and to the best of my knowledge, there is only one dedicated and practicing Neuroendocrine specialist dietician in the whole of the UK (…..I’m willing to be corrected here). Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I personally do not believe this is the best or optimum solution. There are very specific issues with NET Cancer patients that are bespoke and complex to the point that conventional cancer diet practices may not fully apply. It’s not just about what you eat………..

NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements where required, post-surgical advice, managing the long-term side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or the consequences of their treatment. Personally, I think more resources and research in this area would be useful.

This gap is one of the reasons why I asked Tara Whyand (a dietician with specialist Neuroendocrine Cancer knowledge) to help me co-author a series of blogs to focus in on a few key areas.  I didn’t want to say what someone should or should not do, I wanted to say why this is an area to watch.  The ‘why‘ is important as it helps you in your efforts to distinguish the effects of a syndrome or a co-morbidity from the effects of your treatment (if applicable).  I find this knowledge helps me to think ‘outside the box’ rather than just accepting ‘it’s the syndrome.  I personally feel I’ve been able to harness this knowledge to improve my QoL.

Blog 1 – Vitamin and Mineral Challenges

Blog 2 – Malabsorption

Blog 3 – Gut Health

Blog 4 – Food for Thought

The following blogs may complement this nutrition series:

IBS

The Diarrhea Jigsaw

The Constipated NET patient

Serotonin

 

thanks for listening

Ronny

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NET Cancer Forums: frighteningly good or good at frightening?


Young-woman-with-computer-worried

When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be negative. Just before my second major operation in 2011, I decided to take the plunge and registered with a UK NET online web forum (not a Facebook one). Looking back to that period, I wasn’t really a major player, more of a ‘lurker’. I’m no longer a part of this forum as it is very ‘cliquey’, has no security (you can read all the posts without a login) and people just wanted to talk about the weather and sheep. I think the clique have driven most people away, leaving just the clique.   I should have listened to the initial advice of that fellow patient! However, as I was to find out later, the real and more positive forum action was happening elsewhere.

Joining Forums.  In 2014 (4 years after my diagnosis), I joined several large Facebook closed groups which function as forums. You cannot view the content of these groups unless you are a member i.e. they are more secure than their Web equivalents. After 4 years, I felt more experienced and knowledgeable and I wanted to learn more about the disease to help with my blog activity.  As a reminder, the aim of my blog is to spread awareness of Neuroendocrine Cancer, but in a positive way in order to generate both internal and external interest (the latter is a key component of my strategy).

Be prepared!  I really was not prepared for what I found in these groups. It seemed many people were in a much worse condition than me and I was shocked by some of the things I read (and saw) and I considered leaving pretty sharpish – quite frankly, it was stressing me out!

Forums don’t represent the whole NET Patient population.  It suddenly became obvious to me that the actual ratios found on forum sites do not equate on the outside, i.e. even on the bigger forums of 2000+ this is not a good representation of the NET patient community when you consider there must be well over 300,000 patients worldwide. For example, on forums, it often appears that everyone has some form of ‘syndrome’ when in actual fact the ratios are much much lower. If you agree with the logic above, this forum ratio of patients is a particularly relevant point for new forum members who, upon joining, will suddenly find that every symptom in existence seems to be continuously (and repeatedly) associated with the disease, causing further distress.  If you think about it, more people are likely to say “yes I have that problem” than “no I don’t have that problem” in response to any question. Regardless of how bizarre or outlandish the question is, someone will nearly always respond saying they also have that issue which can unfortunately and on occasion make it seem more prevalent than it actually is. Perhaps more patients should say “no, not me” to prevent these frequent perceptions and misunderstandings. I think that large quotas of the forum population will simply be ‘lurking’ picking up bits and pieces of interest but not contributing. I guess I was initially in that sub-group – probably still am to a certain extent!  All of that said, you can pick up some useful information in some of these exchanges but only once the ‘shock factor’ wears off.

Diagnosing the Undiagnosed.  There are also many ‘undiagnosed’ people on forums searching for clues for their long-standing illnesses. This isn’t surprising as Neuroendocrine Cancers are notoriously misdiagnosed as routine ailments, in some cases for years. I guess the power of the internet leads them to forums.  These cases tend to come and go and you can almost sense the frustration of those who believe they have NETs but are not yet medically diagnosed with any illness. I really feel for these people and I feel helpless that I’m unable to wave a magic wand. However, I can’t help feeling that some might be convincing themselves they have Neuroendocrine Cancer by what they read, or perhaps have even been nudged (further) into this belief by their well-meaning audiences who, like me, are simply trying to help?  Only my opinion.

Be prepared for toilet conversations.  A much discussed topic and sometimes not for the very squeamish.  I’ve seen some unusual pictures on forums but the worst by far was one of someone’s faeces.  I struggled to understand why anyone would post that – moreover, I was amazed the site administrators allowed it.  No thank you!

Be prepared for God conversations.  There is a lot of spiritual and religious content on certain forum sites. I’m not a religious person but I totally respect that many people are. However, on some forums, there is a very heavy religious and spiritual message presence and this may not be everyone’s cup of tea.

Be prepared for strange behaviours. One of the most hideous aspects of forums is the appearance of ‘on-line bullying’ or arguments which happen now and then.  However, definition is important here.  Cliques of core users can appear overpowering particularly when someone disagrees with one of the ‘clique’.  If you want a very wide-ranging set of opinions on some basic NET information – join a forum!  Be prepared to see disagreements and many ‘one to ones’ or ‘one to manys’.  Fortunately, it’s uncommon and a well-administered site will deal with it quickly.  I recently left one UK online web forum after very politely suggesting a different opinion to the ‘reigning clique’ which resulted in a coordinated and personal tirade against me (i.e. online bullying).  The posts were removed (indicating the administrators agreed with my complaint). Amazingly some of the ‘reigning clique’ followed me to another forum and continued their personal attacks (again posts were removed when I complained).  Administrators need to stamp on this sort of behaviour when it happens and not 36 hours after the event. My advice is not to join an unmoderated forum.  In another but different example of bullying, I was blocked from one site without notice or reason and to this day I have never found out why, despite trying very hard (although I suspect ‘politics’).

Be prepared for masses of ‘tat’.  Another area which puts me off certain forums is the masses of ‘memes’, pictures, quotes, miracle ‘snake oil’ cures/medical myths and stuff you see plastered all over the internet – these things are the ‘junk mail/spam’ equivalent on Facebook and some can also be a security problem. I’m very surprised the administrators allow so many of them as they clog up the timeline making it easy to miss an important post and they can present security risks for those who click on them.

Be prepared for masses of black and white striped animals. I don’t do zebras, I’d rather talk about people.  I therefore find myself objecting to being described as a ‘Zebra’ and part of a ‘herd’. Side by side, a post (say) about how to improve quality of life or someone asking for help is likely to get less views/likes/comments than a picture of a Zebra …… that can’t be right.  I tend to ignore these posts on any social media. If anyone wants to fixate on zebras, that’s fine ….. just don’t expect me to join in!

The strange thing is that in contextual terms, the zebra represents the disease, so when someone says “I am a zebra”, this is in effect saying “I am a disease”.  The problem is that the NET community has become “too cute” with the term and it now lacks any ‘kerb appeal’ to the outside world.

I have my own strategy for spreading awareness which seems to be well received and more understandable to external audiences and many NET patients. Moreover, my awareness strategy covers a much bigger spectrum than offered by the narrow and blinkered diagnostic messages inferred by this aged and often misquoted equine analogy. I say Let’s talk about people not hoofbeats.  By the way, NET Cancer is not as rare as you think.

Don’t let forums be your life.  I’ve recently cut down my membership of groups, not only because they were not a good fit for me but because forums were taking over my life!  I found a lot of the content was making me depressed, mostly due to all the issues outlined above. So, I’ve left most groups. I occasionally visit to take a look for anything of interest.  You can search really easy in a Facebook forum to read about a particular subject.

So …………….

Are forums ‘frighteningly good’?  There can be a lot of positive outputs from forums and to be truthful, I have learned a lot and made some online friends too.  One of the most amazing things I found was the presence of NET Cancer specialists on certain sites.  I found it astonishing they even had the time – but they are there, contributing to posts, trying their hardest to answer questions aimed directly at them – 24/7.  I’m sure the forums are very useful for some people who are able to prioritise and filter to take what they want from the sites. Some people also use them as a lifeline due to a lack of support in their local area. In that respect, they are frighteningly good.

Are forums good at ‘frightening’?  Yes, they can be good at frightening for those already in an anxious or delicate state.  I like to help people but for the first couple of months after joining, I found myself feeling totally helpless with the sheer number and range of problems.  Unfortunately, well-meaning people give totally different and dangerously conflicting answers, even to simple questions. I find this very frustrating even though I learned to prioritise and filter – I just felt bad that the questioner was getting no answer (50 different answers is no answer) or the fundamentally wrong answer.  I also noticed that some countries are more prevalent users of forums to ask fairly significant and critical questions of other patients.  Sometimes I think this is perhaps an indication of the health system in place and/or a lack of access to proper NET advice from professionals.  I think there can be a lot of ‘firing from the hip’ on forums and sometimes it motivates me to write a blog on a particular subject having done a week or so research and with careful thought.

My own Blog site is not a forum.  It’s worth pointing out (particularly to those who run the forum sites), that my blog with its associated Facebook page is NOT a forum. Nor is it a fundraising or selling site for those who are twitchy about this.  My blog is not aligned to any particular foundation or fundraising organisation.  I just want to send out some positive messages associated with a particular blog subject which will invariably be about Neuroendocrine Cancer awareness and support.  I also function as a signpost for those who may be a bit ‘lost’ and I find these frequently in some of the more obscure and non-NET groups; and in increasing frequency, they are finding me through my digital footprints on numerous social media systems. I’m always happy to talk to people in general terms but I prefer to direct people to the most appropriate and reputable NET supporting organisations and forum sites, particularly in their own country.

I now receive dozens of messages/emails every week but I find myself increasingly hesitant to recommend people I don’t know too much about to certain forums. Don’t get me wrong, I think some forum sites do a great job but they can be pretty frightening places for the unwary (and on occasion…. the wary!).

thanks for reading.

Ronny

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My Diagnosis and Treatment History

 

Neuroendocrine Cancer – don’t break my heart!


Carcinoid - don't break my heart!

NETs – don’t break my heart!

Last week the papers seemed to be full of cancer stories and one that particularly caught my eye was that cancer had climbed to second place on the list of the world’s biggest killer diseases. The statistics were captured between 1990 and 2013 with smoking, obesity and living longer apparently contributing to the rise. Heart disease still has the top spot.  It got me thinking about how unlucky it would be to succumb to both?  I then remembered I knew something about a type of Cancer that can actually lead to heart disease.

Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome.  The most common type of Neuroendocrine Tumour (so called Carcinoid), can be accompanied by Carcinoid Syndrome which if not diagnosed and treated early enough, can lead to an additional complication known as Carcinoid Heart Disease (CHD) or Hedlinger Syndrome. However, very late Carcinoid diagnoses can present with CHD already in place.

Excess serotonin, a hormone released by NETs into the bloodstream seems to be the prime and lead suspect for causing thick ‘plaques’ or fibrosis tissue within the heart muscle and damage to (mainly) the tricuspid and pulmonary valves on the right side of the heart which can become ‘tightly narrowed’ or ‘leaky’.  Other substances associated with Carcinoid Syndrome may also be involved (e.g. tackykinins). The presence of liver metastases may allow large quantities of these substances to reach the right side of the heart without being filtered out by the liver but the primary and other secondaries can still contribute to the problem. It’s important to note that the damage is nearly always caused by excess secretions of substances from malignant neuroendocrine cells rather than any direct metastatic involvement of the heart.

Patients with carcinoid heart disease normally present with symptoms such as breathlessness (dyspnea), fatigue, ascites, swollen ankles (edema). However some patients can be asymptomatic.  The left side of the heart is relatively protected, with the pulmonary circulation filtering out the majority of the serotonin and other substances produced by the tumours.  However, involvement of the left-sided valves can sometimes be seen in patients with very active metastatic disease, bronchial carcinoid or those with an existing heart condition known as Patent Foramen Ovale (hole in the heart).

When I was diagnosed in 2010, I was displaying symptoms of carcinoid syndrome and had to undergo a plethora of tests including something called an Echocardiogram – a sonogram (ultrasound) of the heart. Note – it is NOT abbreviated as ECG, which lay persons often use as an abbreviation for an Electrocardiogram – a totally different test.  Carcinoid heart disease is a relatively late manifestation of neuroendocrine tumours; however, it can have an impact on the prognosis of these patients. Thus, early testing is vital for each patient presenting with carcinoid syndrome so that treatment can be considered. Whilst there are certain biomarkers which might indicate the potential for Carcinoid Heart Disease to be present, Echocardiography is the gold standard for detection. Depending on the results of the Echocardiogram, two further investigatory tests may be ordered up – transoesophageal echocardiogram and cardiac catheterisation.  Patients without symptoms can undertake a blood test called NT-proBNP which can function as a screening test.

If you ‘google’ Carcinoid Heart Disease, be careful where you look as there are some statistics to be found in terms of incidence and prognosis.  I suspect they may be out of date and have yet to catch up with improvements in the latest diagnostic and treatment techniques. Either that or they fail to mention the disease might only be clinically significant in much smaller percentages.

On a positive note, I sense major strides in worldwide awareness campaigns which should lead to earlier diagnosis and therefore earlier treatment for Neuroendocrine Cancer. Combine that with new and innovative treatments in debulking/removing/shrinking tumours and controlling syndromes – particularly the use of somatostatin analogues with the latter, should mean that fewer people will succumb to this additional complication. I don’t see a lot of Carcinoid Heart Disease posts on the various forums which hopefully is a good sign.

(Added 18 Jun 2016). I did blog about a new treatment for Carcinoid Syndrome called  Telotristat Ethyl (read here).  At ENETS 2016, a report claimed that it appeared to “halt Carcinoid Heart Disease“.  Telotristat Ethyl reduces serotonin to levels which appear subthreshold to that which stimulates fibrosis associated with CHD. This drug might prevent the need for valve surgery in many cases, and enable the use of bioprosthetic valves in others, without recurrent fibrosis.

Although I’m fairly stable, I still try to get an Echocardiogram on an annual basis and am very happy to have this one in my ‘test golfbag’. The procedure is painless and takes around 20-30 minutes.  My results have always been OK.

Make sure you ask your specialist about this test on initial diagnosis and as part of your regular checks.

If you have time please check out this excellent video presentation on Carcinoid and Your Heart with cardiologist Dr. Jerome Zacks from Mount Sinai Hospital and the Carcinoid Heart Center, both in New York City – click here  Thanks to the NorCal CarciNET Community and Carcinoid Cancer Foundation for alerting me to this video.

Thanks for reading

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Ronny
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