“Trust me, I’m a Doctor”

0c56a9eOne of the most frequent posts on forums is about the Patient-Doctor relationship (or occasionally a lack of it…..).   Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010.  The vast majority of people tend to trust Doctors and I’m a bit old-fashioned in this respect.  If you have metastatic Neuroendocrine Cancer, you see medical staff a lot!  Relationships and communication can therefore become more important than ever.

However, people with less common conditions can perhaps be more difficult to satisfy.  A ‘generalist’ doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at secondary care level, certain less common conditions still need dedicated specialists and these services may not be located at every hospital. Clearly with Neuroendocrine Cancer, the optimum scenario is to be treated at a NET specialist centre or at least be overseen by them.  However, these can be thin on the ground and/or the medical system in place is not able to provide access to these experts. Geography may also be playing a part causing further anxiety and this is not helpful if you are already fighting cancer.  Communications and relationships between patients and doctors can therefore be more difficult even with the right diagnosis.

I see so many issues on forums ranging from people who are simply looking for a specialist to people who still don’t think they got the right treatment from the specialist they eventually found.  Emotions directed at physicians range from ‘god-like adulation’ to offers of violence!   If you only looked at forums, you would believe there are only a handful of NET Cancer specialists when in fact there are many more than this. Check out the most up to date lists inside this article – click here.

I know from talking to other patients that some have not had the ideal experience with their doctor(s).  Even those who found a NET specialist report the odd issue and feelings of unhappiness.  I never cite these issues publicly, in particular the hospital or the doctor, because for every one of these stories, you can find dozens of good patient experiences with the same hospital and doctor.

It’s a really complex area and it can be compounded by the health system in place but many things are common across the board.  One of the reasons making it complex is that it can be about relationships and communication – both ways!   Thus why I was interested to read an article by a physician who listed a number of tips for patients which I think are as relevant to Neuroendocrine Cancer as they are to other conditions (……in fact some more so!).  Relationships and communication will not cure or reduce your cancer; or debulk your tumours – well not directly ….. but it can help along the way.  And although the article appears to be written in a post diagnosis context, some of it is also relevant to pre-diagnosis.

The top 8 tips are:

  1. Know your own communication style and preference for informing and being informedThis is an interesting point which I hadn’t really thought about.  That said, some of the response to this tip can be addressed in some of the other tips.  I guess in hindsight, asking my doctors not to hide stuff and to just “hit me with it” is an indication that I had set my preferences early on. I wanted to know the real problems I was facing.  Additionally, my Oncologist knows I like copies of all tests and reports and he obligesI always take notes.
  2. Think about how you prefer to hear important health information such as the results of a biopsy or a scan and then convey that to your doctor or nurse.  I think this is partly addressed above.  I see my MDT face to face every 6 months but if it is for bad news, I would certainly like some notice in order that I can be accompanied by my wife. I don’t think I’ve made that clear enough so an action for me here.
  3. Prioritize your concerns, if you present your doctor with a very long list of questions or symptoms at the very end of the visit, it’s quite likely that you will both end up frustrated.  I have experienced this issue many times but gradually I’ve learned how to improve this form of communication.  It’s easy to forget your physician has other patients and only has a finite time to spend on your case.  I now send my Oncologist a summary email with my top 3 or 4 concerns and I do this around 2 weeks prior to each appointment.  I copy in the specialist nurse who is mostly already aware via frequent communications.  This not only gives them some time to read but also prevents the scenario above.  It’s starting to work better.
  4.  Make your needs known, doctors and nurses cannot read your mind.  This is an absolutely key tip as far as I’m concerned.  I believe the patient is the most underused person in healthcare.  Patients have a part to play in their own  diagnosis phase and this continues all the way through to ongoing treatment (including wary of the doctor).  Patients must have a voice and patients must use this voice to describe what’s going wrong with their body and what’s troubling their mind.  Doctors and nurses cannot read your mind but they must listen to your voice.
  5. Trust the clinicians involved in your care and think of them as partners.  I think all clinicians want us to trust them after all they’ve done the 10 years training and we have not!  However, with less than common conditions, I suspect patients probably need to be wary and advocate more. I think of myself as a partner (part of the MDT for the period of my consultation) and so by default, I already think this way.
  6. Beware of the common trap of thinking in terms of all or nothing or rushing to conclusions.  This is an interesting one for incurable but treatable cancers.  I think with incurable Neuroendocrine Cancer, you need to be prepared for a long haul and the occasional bump along the windy road.  Services and inspections will need to be done and tyres will need to be changed.  It’s not a perfect journey and don’t trust the SatNav!
  7. Share the burden of not knowing how things will ultimately work out.  This is a difficult one and I suspect each person will have their own concerns and their own way of dealing with it.  I’m thinking this might be more important for younger patients who have young families to look after.  I’m a ‘glass half full’ person so it’s an awkward one for me.  I guess as I’m feeling confident I’m not leaving anytime soon, it’s something still stuck in the back of my mind.
  8.  Find ways of being at ease, even during frightening or turbulent situations.  Easier said than done!  Again, we all have different ways of dealing with our situations but I do believe if you have addressed all the tips above, this should make it easier.  I also think that learning a lot more about your disease really helps to communicate about it better.

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I’m often shocked to hear that people ‘fire’ their doctor but I guess if you are paying out of your own pocket, it can be an apt word to use! Clearly if the service you receive is not working to your expectations, then a move might be beneficial for both parties.  It’s a big decision though and for those who have moved on, I sincerely hope the grass has been greener on the other side.

You can read the full article from Cancer Knowledge Network here: Reflections on patient-physician communication

You may enjoy my article – Diagnosed with Neuroendocrine Cancer? – 10 Questions to ask your Doctor

And this one – 7 tips for conquering fear

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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

 

 

I bet my flush beats yours?

royal_flush_w
There are different types of flush!

Neuroendocrine Cancers can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some.  Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities which have similar symptoms.  Textbook diagnostics just don’t make sense, sometimes even when the doctor suspects Neuroendocrine Cancer i.e. classic symptoms of ‘something’ but with negative markers for NETs. Clearly those are extreme cases and just like other complex diseases, many diagnoses of Neuroendocrine Cancer can be extremely challenging.  Even for an experienced doctor, it can be a difficult jigsaw!

Most types of Neuroendocrine Cancer can be accompanied by a ‘syndrome’ i.e. the tumours are ‘functional’ and this is normally (but not always) associated with metastatic disease. At this point it’s also worthwhile saying that some Neuroendocrine Cancers can be ‘silent’ (non-functional) for years before any symptoms show and it’s normally only when they metastasize, that these clinical syndromes come to life. Ironically, the manifestation of the disease with a syndrome can occasionally turn out to be a life saver albeit the cancer is normally incurable at this stage – but still treatable.

The most common type of Neuroendocrine Cancer can often present as a collection of symptoms known as Carcinoid Syndrome and the most common of these is flushing with approximately 84% frequency.  Others symptoms include (but are not limited to) diarrhoea, heart palpitations, stomach cramps and general abdominal pain/discomfort, shortness of breath, wheezing.  You can see the scope for confusion and misdiagnosis.  You may find my blog on the ‘5 E’s of Carcinoid Syndrome’ useful.

When you look at these general Carcinoid Syndrome symptoms, flushing seems to be the one that stands out as a ‘cardinal sign’ whereas many others are vague and easily confused with common/regular illnesses.  However, the flushing is reported to be different from most people’s perceptions of a ‘flush’.  The Carcinoid flush is almost always ‘dry’.  To quote my ‘amazing yellow book‘ (co-authored by Woltering, Vinik, O’Dorisio et al), “…. a good rule of thumb is if the flushing is wet (accompanied by sweating), it is due to a cause other than Carcinoid”.   Dr James Yao, another well known NETs guru also raises this distinction by stating…. “The facial flushing of carcinoid syndrome is usually a dry flushing, and not associated with sweating like other kinds of flushing. The flushing is often a symptom that others notice before patients do. They may not feel it themselves.”

Additionally, from the same source, there appears to be at least two varieties of flushing in Carcinoid Syndrome related to two different anatomical regions of the primary tumour (again a useful guide from my amazing yellow book):

What to Look For in Flushing – Distinguishing Signs and Symptoms

There are two varieties of flushing in carcinoid syndrome:
1. Midgut: The flush usually is faint pink to red in color and involves the face and upper trunk as far as the nipple line. The flush is initially provoked by alcohol and food containing tyramine (e.g., blue cheese, chocolate, aged or cured sausage, red wine). With time, the flush may occur spontaneously and without provocation. It usually lasts only a few minutes and may occur many times per day. It generally does not leave permanent discoloration.

2. Foregut tumors: The flush often is more intense, of longer duration, and purplish in hue. It is frequently followed by telangiectasia and involves not only the upper trunk but may also affect the limbs. The limbs may become acrocyanotic, and the appearance of the nose resembles that of rhinophyma. The skin of the face often thickens, and assumes leonine facies resembling that seen in leprosy and acromegaly.

Another source for flush descriptions comes from a paid article written by well known NET Endocrinologist – Kjell Öberg.

Four different types of flushing have been described in the literature.
Endocrinology: Adult and Pediatric – 7th Edition 2016.

The first type is the diffuse, erythematous flush, usually affecting the face, neck, and upper chest (i.e., normal flushing area). This flush is commonly of short duration, lasting from 1 to 5 minutes, and is related to early stages of malignant midgut NETs.

The second type is violaceous flush, which affects the same areas of the body and has roughly the same time course or sometimes lasts a little longer. These patients also may have facial telangiectasia. This flush is related to the later stages of malignant midgut NETs and is normally not felt by the patients because they have become accustomed to the flushing reaction.

The third type is prolonged flushing, lasting for hours up to several days. It sometimes involves the whole body and is associated with profuse lacrimation, swelling of the salivary glands, hypotension, and facial edema. These symptoms are usually associated with malignant bronchial carcinoids.

Finally, the fourth type of flushing reaction is bright red, patchy flushing, which is seen in patients with chronic atrophic gastritis and ECLomas (derived from enterochromaffin-like cells) of the gastric mucosa with evidence of increased histamine production.

Differential diagnoses for flushing?

The facial flushing associated with NETs should be distinguished from other causes of flushes. The carcinoid syndrome flush is provoked by spicy food, alcohol, and physical and psychological stress, and it is often worse in the morning. Patients with idiopathic flushes usually have a long history of flushing, starting rather early in life and sometimes with a family history without occurrence of a tumor. Menopausal flushes usually involve the whole body and might be related to release of calcitonin gene–related peptide (CGRP) with transient vasodilation, a so-called dry flush. Another type of menopausal symptom is the wet flush, which includes epinephrine-induced sweating. Proposed mediators of flushing in menopause are CGRP, histamine, prostaglandins, serotonin, lysyl-bradykinin, and substance P. Estrogen is known to have an impact on the production and release of different signaling substances such as noradrenaline and β-endorphin. Low estrogen levels cause lower β-endorphin activity, which in turn enhances the release of gonadotropin-releasing hormone (GnRH), which gives rise to high luteinizing hormone (LH)levels. Postmenopausal women in whom a true carcinoid syndrome is developing can tell the difference between the two types of flushes. Sometimes patients with medullary thyroid carcinoma have brief flushes provoked by alcohol. In patients with watery diarrhea, hypokalemia, achlorhydria syndrome (WDHA; vasoactive intestinal peptide [VIP]omas), a purple-red constant flushing of the whole body may develop. This flushing reaction is related to the vasodilator effects of VIP. Flushes seen in mastocytosis are related to release of histamine from mast cell granules. Mastocytosis is a rare disease of mast cell proliferation that occurs both cutaneously and systemically.

So it’s clear from our experts that the flushing symptom has many potential triggers and can be attributed to the secretion of excess hormones associated with Neuroendocrine Tumours. It’s also clear that the symptom is not just associated with carcinoid syndrome. Although many people focus on serotonin as the main culprit, there appears to be significant evidence to suggest that other hormones may be playing a bigger part with this symptom, e.g. histamine (particularly foregut), tachykinins (Substance P), bradykinins, and prostaglandins.

If you study the online forums, there are frequent questions about flushing, particularly from those looking for a diagnosis and are suspecting Carcinoid Syndrome due to a flushing symptom. However…… even flushing cannot always be attributed to a NET, particularly if it’s the only symptom being presented.

Flushing tests

This is a very useful table taken from my amazing yellow book which gives the tests required to determine the potential source of a flushing (differential diagnosis).  I strongly suspect this is not an exact science (…..is anything in medicine?) but it’s extremely useful.  Personally I would have included Rosacea :-).  The referenced article “>Endocrinology: Adult and Pediatric – 7th Edition 2016 by Öberg, Grosssman et al, generally agrees with this list but adds WHDA Syndrome (a pNET called VIPoma), food, drugs, ethanol and idiopathic. It also generalises Neurologic disorders (see more below).

Öberg, Grosssman, et al list the following drugs that can cause flushes:

  • Bromocriptine
  • Tamoxifen
  • Nicotinic Acid
  • Opiates
  • Calcium channel blockers
  • Ketoconazole
  • Chlorpromazine
  • Cephalosporin

Öberg, Grosssman, et al list the following foods that can cause flushes:

  • Spicy food
  • Glutamate
  • Sodium nitrate
  • Sulfites
  • Hot beverages

Öberg, Grosssman, et al also list the following neurologic disorders that can cause flushes:

  • Anxiety
  • Migraine
  • Parkinson’s disease
  • Spinal cord lesions
  • Brain tumors

Clearly these lists are those that can cause a flush but not everyone will experience this.  For example, when I was syndromic with flushing, I never had any issues with hot beverages.

My own experience with flushing brings back some memories and it emphasises something I say a lot – the patient has a big part to play in their own diagnosis.  Please check out this 90 second video about how I did not play my part!  I was experiencing a mild and innocuous flushing sensation for some months before I was diagnosed with metastatic Neuroendocrine Cancer.  Even though I knew it was weird and something I hadn’t experienced before, I totally ignored it.  I failed to mention it at any of my routine GP appointments or my annual asthma clinic.  I failed to mention it to my specialist who was investigating a GP/PCP diagnosis of Iron Deficiency Anemia/weight loss.  After a CT scan, the specialist appeared to be scratching his head …..  at that point he knew I had cancer but he also knew it was unusual.  I suddenly mentioned the flushing and ‘bingo’.  It was the face of a man who had just found a missing piece of a jigsaw and he correctly predicted the output from my subsequent liver biopsy.

For the next few months, I was keeping my condition private at work but it was sometimes difficult to disguise the flushing. At least  one person thought my blood pressure was going up! Fortunately, my flushing disappeared after treatment.

I’ll complete this post with an interesting summary from an online forum post in which I was participating. There was a general discussion about the severity of ‘syndrome symptoms’ including triggers and I was staggered to read that people were experiencing flushing whilst carrying out routine day-to-day tasks. I’m so happy I don’t flush when I eat one square of chocolate (that would be a complete disaster!).  The one which caught my attention was the simple act of washing hair. Whilst I initially raised my eyebrows and laughed, it did make me think back to the last flush I experienced (and touch wood it was the last …..).  Following my diagnosis, I commenced daily injections of Octreotide. These injections reduced the flushing but it didn’t eliminate it. However, after my ‘debulking’ surgery in Nov 2010, my flushing disappeared.  However, I do remember this small flush coming out of nowhere whilst I was recovering in hospital after that surgery. I was cleaning my teeth and I do vividly remember this minor task taking some effort!

I haven’t had a flush since and if this symptom comes back, I’ll know I have a new problem to contend with.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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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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Neuroendocrine Cancer Nutrition Series Article 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 my article ‘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 post, I also suggested that there does not appear to be enough research or support 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 some of the fatigue!

I later attended a fantastic patient day where I was introduced to the UK’s solitary Neuroendocrine Cancer specialist dietician (this was in 2012, things are improving in 2019). 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:

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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.

It is vital that nutrition is considered


Links to the other nutrition blogs:

Article 2 – Gastrointestinal Malabsorption.  Overlapping slightly into Article 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Article 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.

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

Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients.

You may also appreciate these articles where there is overlap:

The Diarrhea Jigsaw – different things can cause diarrhea, it’s not all about syndromes.

The Constipated NET Patient – yes they exist!

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

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The trouble with the ‘NET’ – Part 1 – Cancer Myths

The trouble with the ‘NET’ Part 1

Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.

In a study published last month, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey.  In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news.  Unfortunately social media ‘misinformation’ includes ‘alleged’ cures for various ailments including cancer.  I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun.  Easy to find, easy to read and worryingly, easy to share.  Surely these cures must be true, after all…..it’s on the ‘NET’.

Has wide access to the internet exacerbated this problem? 

The rise of the (Inter)NET has allowed people to use ‘social technology’ to help shape the world’s events and culture. Additionally, the NET has increased the speed of how relationships develop, the way information is shared and (whether you like it or not) how influence can be leveraged for gain.  Facebook has taught us new ways to communicate and collaborate through features like feeds, profiles and groups. At the same time, smartphones and tablets provide mobile and instantaneous access to information from any location.  Whether you like it or not, we are witnessing the power of social media and its effect on society. However, the ‘NET’ can also provide ‘misinformation’ and it’s pretty good at it. 

When I was diagnosed with metastatic Neuroendocrine Tumours (aka ‘NETs’) in 2010, I took to the ‘NET’ to find out about my ‘NETs’ 🙂  However, I soon found out the NET is potentially more dangerous than my NETs.  Put a foot in the wrong place and ‘boom’. Not only can you get easily lost but you end up with dubious information which looks pretty credible. Moreover, in some cases this can be unnecessarily stressful and upsetting for some.  Fortunately I had worked with information technology for years and combined with my sceptical but inquisitive nature, I was able to overcome this problem.  I’m very careful where I look and now use that to my advantage, along with many other savvy cancer patients.  

The champion ‘myth busters’ are the world-renowned Cancer Research UK and I always go there when I see something in the media which sounds too good to be true. For example, there is a 20 year old myth that sugar feeds cancer cells and this seems to be shared by many patients as something which looks true.  It is NOT true and the biggest cancer advocate organisations will all confirm this.  Although research has shown that cancer cells consume more sugar (glucose) than normal cells, no studies have shown that eating sugar will make your cancer worse or that, if you stop eating sugar, your cancer will shrink or disappear.  However, a high-sugar diet may contribute to excess weight gain, and obesity is associated with an increased risk of developing several types of cancer – that is a totally different problem. This is one of a number of cancer myths that seem to continuously patrol the NET, including on patient forums. Take a look at Cancer Research UK’s ‘Don’t believe the hype – 10 cancer myths debunked’.  Whilst you’re there, take a look at their Science blog as they always follow up the most recent headline grabbing newspaper articles claiming to have found the cure for cancer (again).  Cancer Research UK will always provide balanced commentary on these claims.

Cancer Research UK is not alone in trying to help dispel some of these myths – you can also fact check on the big US site Cancer.Gov – see their myth busting article here.

I also like the list from Cancer.NET – American Society of Clinical Oncology (ASCO) – read it here.  (Science Fact or Science Fiction)

You may also enjoy:

Alternative Therapy risks (or lack of) click here

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

Miracle Curesclick here

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Hope is great, false hope is not.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news. Help me build up my new site here – click here and ‘Like’

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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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