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Neuroendocrine is not your average cancer but it can be pretty mean


consequence-sign

Most people have perceptions of cancer in their heads, fairly fixed perceptions too.  They think about all the stuff they see daily on TV, in the main press, and people they know.  The big cancers set the scene.

Most doctors know about the big cancers.  They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy.  Many survivors will have side effects of their treatments, e.g.perhaps temporarily losing their hair.  More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of disease is a common term I see).

Most NET Cancer isn’t really like that!  Whilst it has a reputation for being a generally slow-growing type of tumour, offers a good outlook/prognosis, has many different types of treatment modalities, it can frequently present at an advanced stage and become incurableand/or offer some quality of life challenges.  For example:

  • Not many doctors know about it.
  • Many patients will have gone through extended diagnostic periods, perhaps months, years in some cases.  It can in many cases be ‘silent‘.
  • Only doctors who know a lot about it, really know how to quickly diagnose it. Only they know how to properly treat it. It’s a very individual disease, there are many factors involved.
  • Another key difference with NET Cancer is that many people will have an associated ‘syndrome‘ and this might have been with them for some time before diagnosis.  The symptoms of these syndromes can sometimes be rather debilitating, even after treatment.
  • Many people will never be disease free nor will be they given a status of full remission.  Their surveillance (scans etc) could continue indefinitely.
  • Many people could be given treatment indefinitely, in particular, Somatostatin Analogues.
  • Many people will live with the consequences of this cancer for a long time and this plays on their mind as well as the effect on their body.

Before you receive treatment, always ask what the side effects might be, how long they might last and how to treat or lessen them. Don’t be afraid to ask, you deserve to be told. 

Neuroendocrine is not your average cancer but it can be pretty mean.  That could  explain why there are so many hardened NET Cancer warriors out there!

p.s. I look well but you should see my insides!

Thanks for reading

Ronny Allan

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My Diagnosis and Treatment History

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Tweeps – have you retweeted this tweet?

Stop talking about it, just go do it!


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Medicine!

yes, we must do this one day …….” and then we don’t! We’re all guilty of it aren’t we?

For years Chris and I have discussed travelling around the coast of Scotland and we’re just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ……. “we must do this one day…….”

I’ve even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new “North Coast 500” campaign which fortunately and timely sparked us into gear.

As a patient with incurable cancer, life can be tough on the body and mind. However, I’ve no intention of laying back waiting to shuffle off this mortal coil. As far as I’m concerned that just leads to lethargy and all that goes with it.

Stop talking about it, just go do it!

I don’t do poetry but I thought this quite apt as I stood by a stone monument in the Cairngorms engraved with this on four sides.  The orange structures in the picture are places to sit and ‘behold’

Take a moment to behold

As still skies or storms unfold

In sun, rain, sleet or snow

Warm your soul before you go

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Cairngorms viewing point

 

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news.

Disclaimer

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For those on twitter – please consider retweeting the post below:

https://twitter.com/RonnyAllan1/status/705391786328510464

Not every illness is visible


asda toilet

Asda UK recognises invisible illnesses

I personally don’t see myself as ‘disabled’ but I do have an invisible illness. I’m fit, can walk for miles, I even look quite healthy.  However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as ‘disabled’ through government schemes.  Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That’s not to say I don’t have any issues at all – because I do!

I was therefore delighted to see news of an initiative supporting invisible illnesses by Asda (for those outside UK, Asda is a major UK wide supermarket chain).  Asda have now recognised that many conditions can be classed as ‘invisible disabilities’ and this need is now recognised in the availability of toilet facilities. This is particularly relevant to my own disease, all types of Inflammatory Bowel Disease (Crohn’s, Ulcerative Colitis) or anyone who has issues due to the consequences of their cancer or treatment (e.g. GI surgery, Chemo, Radiotherapy).

I wrote an earlier blog on this subject called “Things are not always how they seem“.  This was a great ‘invisible illness’ awareness message in the form of a reference to a newspaper article about a lady who had Inflammatory Bowel Disease (IBD) and was ridiculed by someone who saw her use a disabled toilet clearly unaware of her invisible illness.  This is definitely worth a read!

I also wrote a blog about my own concerns focussing in on the issue of ‘Stomach Cramps’.  This is something that causes me issues from time to time and I dread a painful occurrence if I’m ‘out and about’.  I generally don’t let Cancer stop me doing stuff.  Consequently, I will still visit remote places as I have done so for the last few years and have intentions of continuing to do so in the future.  Fortunately I have been lucky with my experiences to date.  If I’m out and about including on holiday, I have no reservations about waltzing into hotels or restaurants where I know there will be toilet facilities. I’ll also use a disabled toilet if others are not vacant.  My worst and most painful experience was in 2014 whilst I was walking along Hadrian’s Wall in remote Northern England – this is covered in my blog “My stomach sometimes cramps my style“.

I have not yet been challenged in my use of toilet facilities (without being a customer) but I always carry some ‘Get me out of jail’ cards just in case.  I have two, one from NET Patient Foundation and one from Macmillan Cancer Support.  You can order these online (links given) and I’m sure other national advocate organisations do similar things.

npf-toilet-card1_Page_1-300x171macmillan toilet

 

I applaud Asda for their initiative.  Lets hope it catches on anytime soon!

I may look well but you should be my insides!

insides

 

 

 

 

 

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

For those on twitter – please consider retweeting the post below:

https://twitter.com/RonnyAllan1/status/705391786328510464

 

 

Neuroendocrine Cancer Nutrition Blog 4 – Food for Thought?


Food for thought

Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer.  In the previous blogs in this series I focussed on the following:

Blog 1 – Vitamin and Mineral Challenges.   This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietician.  This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.

Blog 2 – 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.

I said in Blog 1 that my intention is not to tell you what to eat, even though that might be a challenge for many and this theme continues. The issue with Nutrition and Diet in general, is that it’s very individual and what works for one may not work for another.  Rather I’d like to focus in on why such things might have an effect.  NET patients may have multiple problems and issues (including the effects of eating) which people may be relating to their cancer or the effects of a particular syndrome or treatment (working that out can be difficult!).  Even if I link you to an authoritative site, it will most likely only show GENERAL GUIDELINES, since patients with NET Cancer should really be assessed on a case-by-case basis.  However, I can say that from personal experience, these guidelines are a good base to start in understanding the issue.  You should always seek professional advice from a reliable ‘NETs aware’ nutritionist that can help you determine what your nutritional needs are and also can guide you in the right direction regarding food and supplement intakes.

In this blog, I want to cover the ‘knotty’ problem of what is in food that might be provoking a reaction and why.  The other thing I would emphasise is that the cause of ‘provocation’ might not just be from what you have eaten, but how much. Moreover, whether the cause is syndromic, due to treatment; or from a comorbidity. For example, if you’ve had classic small intestinal NET surgery, you’re likely to be missing a few feet of small intestine and at least your ascending colon and all that goes with that (i.e. you’ve had a right hemicolectomy).  It follows that your food might transit quicker than normal on its journey from mouth to toilet.  There are no doubt other issues which might cause you to ‘move quickly’ and most of these issues will have been covered in Blogs 1, 2 and 3.  For those with Carcinoid Syndrome, you may also find my blog on the 5 E’s useful.

A high level of serotonin is something people might be looking to avoid due to its relationship with midgut NETs in particular. One thing I noticed is that experienced dietitians are not saying you must totally avoid foods associated with serotonin – the only time they would recommend staying totally away from these foods is before and during a 5HIAA urine test (5HIAA is a by product of serotonin) as this could skew the results. Experienced NET dieticians will also tell you that amines in foods containing the precursor to Serotonin will not affect tumour growth.  

It’s not just a serotonin problem – it is actually a much wider issue with something ‘vasoactive amines’ (or pressor amines).  They are precursors for catecholamines such as adrenaline, which trigger some NETs to secrete vasoactive substances, which cause symptoms or in extreme cases, carcinoid crisis.  Tyramine is the most active of these amines. Other strongly active vasoactive amines found in food include serotonin and histamine that can cause strong dilation of capillaries, and also cause hypertensive crisis.  Reported reactions from these vasoactive amines are acute hypertension, headache, palpitations, tachycardia, flushing and unconsciousness. As a general rule, Tyramine and other pressor amines are usually only present in aged, fermented, spoiled protein products, but quite often, it’s food containing a precursor amine that is what you are looking for (for example Tryptophan is a precursor to Serotonin).

Personally I cannot think of a single food which causes me to have a ‘reaction’ (…… although it’s been a while since I was syndromic). I do think there is a link between quantity of food and this is highlighted in the chart below. This is of particular importance to those who’ve had intestinal surgery who may see a reaction to any food due to the quantity for obvious reasons.  It’s important to distinguish these reactions from perceived ‘syndrome’ effects when it’s actually something caused by the consequences of cancer.  The answer might simply be to reduce food intake rather than cut foods out, particularly foods that you may need for nutrition and energy.  And of course, foods you enjoy are related to quality of life.

What I do know from masses of experimentation and running a diary, is that large meals can give me issues. However, I put that down to surgery – NOT syndrome.  I also reduced consumption of fatty foods but that was mainly to combat malabsorption caused by my surgery and exacerbated by Somatostatin Analogues. I reduced alcohol but mainly because I was concerned about my compromised liver after surgery.

So what are the most provocative foods?  This diagram here is extremely handy but I must emphasise that the cause of the provocation may not have been caused by the food itself (scientifically speaking), just what people report.  Everyone is different, so some people might not have any reaction to these foods, or reduced amounts.

foods provoking

Graphic courtesy of The Carcinoid Cancer Foundation (CCF)

What are the foods containing high levels of these vasoactive amines?  It is here that I refer you to a site which was one of the very first things I read after my diagnosis, and I re-read it after my initial treatment when I discovered that my debulking and cytoreductive surgery came with some consequences.  I STRONGLY recommend you take the time to read through this whole section of Carcinoid Cancer Foundation’s website.  This is a quite amazing piece of research put together by the late Monica Warner (wife of Dr Richard Warner) who herself said “It has not been an easy task to put these guidelines together“.  I don’t believe there is another source of such detailed research and guidelines on the Nutritional Concerns for the NET Patient (note the term Carcinoid is used throughout).

READ THE RESEARCH AND GUIDELINES BY CLICKING HERE

I hope you found my ‘food for thought’ tasty 🙂

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

[e] There is an excellent video from the NET Research Foundation (what to eat and why) – CLICK HERE

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

For those on twitter – please consider retweeting the post below:

https://twitter.com/RonnyAllan1/status/705391786328510464

Living with Cancer – or Cancer Survivor?


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Living with Cancer or Cancer Survivor?

I don’t normally use the word ‘survivor’ in relation to my incurable cancer, it just doesn’t seem to sit right despite the fact that I’m a ‘glass half full’ kind of guy. I always thought it only really applied to those who were in full remission. HOWEVER, I was studying the term ‘Survivorship’ and found that there might be something in it for those living with incurable and long term cancer.  This piece of research has changed my thinking.

What is ‘Survivorship’?  The definition differs slightly between national cancer advocate organisations but it would appear it does mean what I thought above BUT is also means “Living with, through, and beyond cancer“. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long-term, to either reduce the risk of recurrence or to manage chronic disease.  It follows that those with incurable Cancers such as my own (Neuroendocrine) should be included under the term ‘Survivorship’.

I researched several national cancer survivorship initiatives and found many similarities at the international level. For example, I blogged about the great programmes in UK via Macmillan Cancer Support, in particularly the Recovery Package (specific support for each cancer patient after diagnosis) and managing the Consequences of Cancer – something very apt for NET Cancer patients – you can read more in my blog ‘Living with Neuroendocrine Cancer – it takes guts’.   There are similar initiatives to be found including in the USA where you can see ‘survivorship’ programmes led by the American Cancer Society and the American Society of Clinical Oncologists.  I’m sure I’d find many others in many countries if I kept searching.

Here’s a fact – more people are now surviving cancer.  I think it’s useful to look at overall statistics for survivorship to contextualise why the word ‘survivor’ might actually be more apt than it was 20 years ago.  For example, in the UK, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%).  This means the number of people who get cancer but die from another cause will have doubled over the past 20 years.  More people are surviving cancer.  I’m seeing similar reports from USA too.  For example, the US National Cancer Institute (NCI) is predicting:

‘Silver Tsunami’ of Cancer Survivors in the next quarter century (read here).

There is also a very recent article which confirms this thinking, let me quote a bit of it: The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they’re learning to live with it.  Full article here.

So does that mean I’m a ‘Survivor’?  My research indicates this is a very individual thing.  One very simple meaning I found is “someone who has a history of cancer“. However, I guess ‘survivor’ does not appeal to all people who simply have a history of cancer; and most likely for different reasons.  For instance, someone might simply identify more with being “a person who has had cancer”. However, for those with incurable or long-term cancers, some people might not think of themselves as a survivor, but more as someone who is “living with cancer.”  I get that and it resonates with my reluctance to use the ‘S’ word to date.  Moreover, I appear to have subconsciously selected my blog name as Living with Neuroendocrine Cancer rather than using the ‘S’ word. That said, thinking this topic through has made me compare where I was at diagnosis and where I am now.  Also, I’ve considered what I’ve been able to do and what I have plans to do, despite my condition.  Perhaps “I got this” was my subconscious thought in the picture I’ve used to head up this blog?

Here’s a great quote I found in relation to the term ‘survivor’:

“You may not like the word, or you may feel that it does not apply to you, but the word “survivor” helps many people think about embracing their lives beyond their illness”.

Are you a survivor?

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

For those on twitter – please consider retweeting the post below:

https://twitter.com/RonnyAllan1/status/705391786328510464

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