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 NETs are not like that! Whilst it has a reputation for being a generally slow-growing type of tumour at the lower grades (but very sneaky though!), offers a good outlook/prognosis for many, has many different types of treatment modalities, it can frequently present at an advanced stage and become incurable; and/or offer some quality of life challenges. For example:
Not many doctors know a lot about it.
Many patients will have gone through extended diagnostic periods, perhaps months, years in extreme cases. In many cases it can 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 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.
There’s a lot of talk about something called ‘unmet needs’ and quite right too. However, there’s not enough talking about unmet needs in our community. This is a highly prevalent cancer and many people live a long time with the consequences of the cancer and it’s treatment.
Before you receive treatment, always ask what the side effects might be, how long they might last and what support you will get to treat or lessen them. Don’t be afraid to ask, you deserve to be told.
“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
Thanks for listening
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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 (see picture below). 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 Foundationand one from Macmillan Cancer Support. You can order these online (links given) and I’m sure other national advocate organisations do similar things.
I applaud Asda for their initiative. Lets hope it catches on anytime soon!
Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focussed on the following:
Article 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.
Article 2 – Malabsorption. Overlapping slightly into Part 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 discusses probiotics. Input from Tara Whyand.
I said in Article 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 – patients can then experiment and see what works for them. 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. Be wary of the internet on diet and nutrition, there is much ‘quackery’ out there and normally they want to sell something regardless of whether it’s good for you or not. Fake healthcare news is big business unfortunately. You may also enjoy article 2 and article 3 of this series in internet dangers.
In this article, 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 Series Articles 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 and in particular those with Carcinoid Syndrome. One thing I noticed is that experienced dietitians are not saying you must totally avoid foods associated with serotonin. I say “associated” because serotonin is not found in foods (another NET myth), it is manufactured from the amines in food. The only time dieticians 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 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’ other than if I eat too much or eat something with a high fat content. Basically for someone who has had abdominal surgery, the system cannot cope for one reason or more – see Series Article 2. It’s important to distinguish this type of reaction which is actually something caused by the consequences of cancer treatment rather than one of the ‘syndrome’ effects . The answer might simply be to reduce or adjust food intake rather than cut foods out, particularly foods that you may need for nutrition and energy. And of course, foods you enjoy which don’t cause issues, 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, as hinted above, 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. Again NOT syndrome. 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, just what people think and reported (clearly scientific intervention might prove it was caused by something else). Everyone is different, so some people might not have any reaction to these foods. As you can see, a large meal is top and I can almost guarantee much of this was caused by people having a shorter bowel due to surgery.
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. This is an 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, therefore it tends to be focused on carcinoid syndrome. Many other NET Syndromes have associated diet and nutrition constraints and problems too.
This is not an exact science and as the author said “I must emphasize at this point that these are only GENERAL GUIDELINES since patients with carcinoid (sic) may have multiple problems and must be assessed on a case-by-case basis.”. So for example eating a big meal comes out top of the survey and does not necessarily mean that is caused by carcinoid syndrome – as I said above, it’s very frequently caused by having a shorter gut, or no gallbladder, and other issues. You can eat a large meal containing very low levels of the offending amines and still run to the bathroom because your waste disposal system can’t cope with the amount – that is not a syndrome problem. One person’s perceived ‘syndrome’ problem is another person’s cancer treatment ‘side effect’. Working out which one is not easy but it’s worth the effort to try to understand which one might be causing the problem.
For the first few years after my diagnosis, I avoided using the word ‘survivor’ in relation to my incurable cancer. It just didn’t seem to sit right despite the fact I’m a ‘glass half full’ kind of guy.
However …….. I was studying the term ‘Survivorship’ and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which seems to have turned rather international) – well done NCSD.Org – you should check out the site and sign up for their newsletter
What is ‘Survivorship’?
The definition differs slightly between national cancer advocate organisations but it would appear it also means “Living with, through, and beyond cancer“ which is a UK term. According to these definitions, 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’.
Times are changing
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 people (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. I’m seeing similar reports from USA too where, for example, the number of cancer survivors is predicted to rise by a third by 2026 (15 million to 20 million). Almost half of the current survivors are aged 70+. In another 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.
Of course, it must not be forgotten that many people will need support to maintain a decent quality of life and be supported with ongoing and long-term treatment. These are both challenges global health systems need to face with rising cancer prevalence. And both of these challenges will greatly affect my own type of cancer – Neuroendocrine. This is why I’m a very strong advocate for more focus on some of these support type issues and unmet needs, and the resources to deliver them.
So does that mean I’m a Survivor?
My research indicates this can be a very individual thing. I guess ‘survivor’ does not appeal to all people who simply have a ‘history of cancer’; and most likely for different reasons. 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.” Some may feel like they’re living but not surviving. I get that and it potentially resonates with my reluctance to use the ‘S’ word for a short period after my diagnosis. 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. I’ve done so much, been to so many places since I was diagnosed, and got plans to do much more, I must be surviving! Perhaps the words “I got this” was my subconscious thought in the picture I’ve used below?
And this picture which always gets a tremendous response every time I post it:
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”.
You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be?
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