While it’s a long way off becoming reality, this is quite an exciting clinical trial. I have no idea if it will pick up Neuroendocrine disease but initially, patients with suspected oesophageal and stomach cancers will be asked to try the test. Later it will be extended to include prostate, kidney, bladder, liver and pancreatic cancers. It’s possible that Neuroendcorine tumours in these locations might be picked up or at least show up some abnormality that triggers further checks.
The fact that Cancer Research UK is involved gives me some confidence as they tend to back the strong horses.
I will keep this article live and track developments.
Since I started blogging, I’ve had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence. There’s a third factor and that is credibility – I’d like to think I’ve worked hard to earn that level of trust in my ‘product’. I use the NET to talk about NETs! I’m a genuine guy with a genuine purpose and I don’t want to sell you anything – my ‘product’ is free.
However, the ‘NET’ can also provide ‘misinformation’. Unfortunately ‘misinformation’ also 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, annoying shared by our friends. Easy to find, easy to read and worryingly, easy to share. Surely these cures must be true, after all…..it’s on the ‘NET’.
I was, therefore, delighted to see that the U.S. Food and Drug Administration (FDA) recently posted warning letters addressed to 14 U.S.-based companies illegally selling more than 65 products that fraudulently claim to prevent, diagnose, treat or cure cancer. The products are marketed and sold without FDA approval, most commonly on websites and social media platforms. Clearly, this is not just a USA problem, I suspect you all could tell me similar stories from your own countries? I just read a story from my own local area only last week. This is only the tip of the iceberg though!
Most of these claims are from obscure unheard of websites (clue 1) and yet they claim to have the cure for all sorts of illness including cancer (clue 2). They normally have a product to sell (clue 3). Clue 4 and onwards can be found by digging into their claims to see if there is any scientific evidence – normally there’s none; or it looks believable but the authors are also the owners of the company selling the product.
Here are some of the tactics they use plus a commentary from the US FDA:
One product does it all. Be suspicious of products that claim to cure a wide range of diseases. A New York firm claimed its products marketed as dietary supplements could treat or cure senile dementia, brain atrophy, atherosclerosis, kidney dysfunction, gangrene, depression, osteoarthritis, dysuria, and lung, cervical and prostate cancer. In October 2012, at FDA’s request, U.S. marshals seized these products.
Personal testimonials. Success stories, such as, “It cured my diabetes” or “My tumors are gone,” are easy to make up and are not a substitute for scientific evidence.
Quick fixes. Few diseases or conditions can be treated quickly, even with legitimate products. Beware of language such as, “Lose 30 pounds in 30 days” or “eliminates skin cancer in days.”
“All natural.” Some plants found in nature (such as poisonous mushrooms) can kill when consumed. Moreover, FDA has found numerous products promoted as “all natural” but that contain hidden and dangerously high doses of prescription drug ingredients or even untested active artificial ingredients.
“Miracle cure.” Alarms should go off when you see this claim or others like it such as, “new discovery,” “scientific breakthrough” or “secret ingredient.” If a real cure for a serious disease were discovered, it would be widely reported through the media and prescribed by health professionals—not buried in print ads, TV infomercials or on Internet sites.
Conspiracy theories. Claims like “The pharmaceutical industry and the government are working together to hide information about a miracle cure” are always untrue and unfounded. These statements are used to distract consumers from the obvious, common-sense questions about the so-called miracle cure.
The rise of the internet means that we need to be very careful what we believe, particularly when the term ‘fake news’ is abundant. The people who work in this ‘dark’ industry are very clever, playing on the mind and fears of those who suffer from cancer and other illnesses which they claim they can cure. Many of them are easy to spot or at least attract your suspicion as you can see above. I’m concerned that some of them make their way onto patient forums unchallenged by the administrators (leave those groups, they are a danger to your health). Here’s something you’re probably not aware of….. I am targeted weekly by people and organisations who want me to advertise their ‘product’ to you guys, some of them are very dubious indeed. I have a “no selling” rule on my site so it’s easy for me to reject anyone approaching me in this way – the very dubious are blocked immediately.
See an article where this post was featured …… Click Here
I will never share this sort of thing on my site and I even check official looking mainstream media articles for the background scientific data before I would share here. For me, regardless of the headline or post picture, this is where credibility comes in. Often (whilst everyone else is sharing), I wait on informed comment from credible organisations such as Cancer Research UK who very frequently have to dampen down the excitement caused by mainstream media ‘headlines’ by providing a more balanced and evidence based view. I’ve blogged before about Cancer Research UK in the post The trouble with the NET (Part 1), The trouble with the NET (Part 2) (with mention of Steve Jobs and Neuroendocrine Cancer). I particularly like their blog 10 persistent cancer myths debunked.
Sharon said …… “This is SO important. As an RN and a NET patient, I am appalled by some of the things I see on Facebook. People facing chronic or terminal illnesses are so vulnerable. Thank you, Ronny Allan”
OPINION. When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. That must have been quite a shock because for a few moments after that, I heard nothing – my brain was clearly still trying to process those words – I wasn’t even feeling unwell! The really important bit I missed was him go on to say “…but with the right treatment, you should be able to live for a lot longer”. Fortunately, my wife Chris heard it all and I was refocused. “OK Doc – let’s go” I said. Always take someone with you to take notes at important meetings with Oncologists!
I continue to see quite a few posts and articles about death and dying and I noticed some patients were using the word ‘terminal‘ to describe Neuroendocrine Cancer, despite in some cases, having been diagnosed some years ago, despite in most cases in reference to well differentiated diagnoses. This label is not just confined to use within Facebook forums, I’ve also seen this on wider social media including twitter, blogs and newspaper items. For some, this appears to be the prognosis given to them by their doctors. I find this surprising. However, I’m much less surprised to see many comments on forums from people who had been told the worst by their doctors but were still alive and kicking WAY beyond those worst case prognostic statements, including the higher grade cases.
Definitions are important so what does ‘terminal cancer’ actually mean?
I’m conscious there are legal ramifications with the definitions (wills, life insurance, disability etc) and that these may differ on an international/federal basis. I therefore intentionally confined my searching to a couple of ‘big hitter’ and ‘authoritative’ sites:
Cancer Research UK defines terminal as “When cancer is described as terminal it means that it cannot be cured and is likely to cause death within a limited period of time. The amount of time is difficult to predict but it could be weeks to several months”.
The American Cancer Society defines terminal as “an irreversible condition (it cannot be cured) that in the near future will result in death or a state of permanent unconsciousness from which you are unlikely to recover. In most states, a terminal illness is legally defined as one in which the patient will die shortly whether or not medical treatment is given.”
Can terminal as defined above be applied to Neuroendocrine Cancer?
I’m sure it can, e.g. with very advanced and very aggressive disease and for any grade when taking into account the condition of the patient and other factors (secondary illnesses/comorbidities, refusal of treatment etc). Clearly, that is a terrible situation. I’m also conscious that some people do eventually die because of this disease or its consequences and that is also terrible.
How long is a piece of string?
I think with most Neuroendocrine Cancer patients, “how long do I have” can be a tough question to answer. Thinking back to my own situation, although it was an obvious question to ask my Oncologist, I can see it might have caught him unawares. I suspect he was erring on the side of caution as I don’t believe he had formulated my treatment plan ….. i.e. my case had not yet been looked at by a Multi-Disciplinary Team (MDT), a bit like a ‘Tumor Board’. I had already been confirmed Grade 2 (via liver biopsy) and my CT scans were indicating widespread disease. I was yet to have an Octreotide scan and the conventional biochemical markers (CgA and 5HIAA). I suspect, faced with my question, he went for the worst case, based on the statistics he had access to at the time. What I now know is that, in the year of my diagnosis, the median survival was 33 months in patients with advanced Grade 1/Grade 2 NETs with distant metastasis. These statistics are certainly better today but my Oncologist was probably on the right track. However, at no time did he use the word ‘terminal’.
The Cancer story is changing
What I also found during my research is that as more and more people in the UK are now living with cancer (all cancer) rather than dying from it, there is a new class of patients emerging – Macmillan UK call this “treatable but not curable” and I believe this is very relevant to Neuroendocrine Cancer. I touched on this in an awareness blog entitled “Living with Neuroendocrine Cancer – it takes guts“. You will find some data in this blog about a major increase in the amount of people with cancer who eventually die of something else (…… basically it has doubled). For many, Cancer is no longer a death sentence. I do accept that it can be difficult to live with certain cancers and this is also covered in my “it takes guts” blog linked above.
Survivorship and Hope
You can find numerous examples of long-term survivors of advanced Neuroendocrine Tumours on the ‘airwaves’, many with a relatively good quality of life (QoL). I don’t normally pay much attention to prognostic data, I take my lead from the huge number of patients living a long time with Neuroendocrine Cancer. However, I was particularly interested to read a set of USA statistics from NOLA (Boudreaux, Woltering et al) which said “Our survival of stage IV midgut NET patients that we performed surgical debulking on was published in the Journal of the American College of Surgeons in 2014. It showed our 5, 10 and 20-year survival rates were 87%, 77% & 41% respectively. It’s also worth noting the comparison with the 2004 SEER database analysis which listed the 5 & 10 year SEER survival at 54% and 30% respectively”. Clearly, the NOLA figures are guidelines (and only for midgut) but they do seem to reflect my previous statement about seeking out positives rather than dwelling on the negatives. The SEER 2012 figures are much better than the 2004 versions stating “Survival for all NETs has improved over time, especially for distant-stage gastrointestinal NETs and pancreatic NETs in particular, reflecting improvement in therapies.
Exciting times ahead
On the subject of therapy improvement, there has been a plethora of new treatments coming online and more entering and progressing through the approvals pipeline. Check out my article entitled Exciting Times Ahead. Also listen to a NET Expert along the same lines. PRRT is making a real difference.
Following my diagnosis in 2010, I went on to receive really good treatment and it continues to this day with Lanreotide backed up by a rigorous surveillance regime (and this is backed up by my own advocacy!). However, I have totally accepted the fact that I have metastatic Neuroendocrine Cancer and that it cannot be cured. By the way, I intentionally used ‘metastatic‘ rather than Stage IV. Mention of Stage IV can set off alarm bells and send the wrong message to the recipient. I don’t believe Stage IV has the same ‘red flag’ meaning for well-differentiated NETs as it does with more aggressive cancers of the same stage. Given what I know now, I would certainly challenge any doctor who told me I had a ‘terminal disease’ and at the same time told me I had a slow-growing well differentiated Neuroendocrine Cancer.
I now live with this disease (….and it’sconsequences) and do not feel like I’m dying of it. Moreover, I most certainly do not see myself as a ‘terminal’ cancer patient, particularly as I’ve now been living with it since 2010.
‘The C Word’ or ‘The Big C’ – the subject which must not be discussed. Or is this now an out of date phrase? I read a useful article a month ago where the author debated where we might be if, 50 years ago, we were as open about cancer as we are now (there, I said the word). Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter has played a huge part in reducing cancer mortality rates and sending more people into remission.
We now have much better tools to discover and treat cancer. Moreover, because we are increasingly open about cancer, there is more awareness. According to Cancer Research UK, as we all live longer, more than one in two people in the UK will be diagnosed with some form of cancer during their lifetime. Personally I find that a staggering statistic. We definitely need to talk about cancer!
We now live in a more open and some would argue less stoic society where more people are prepared to talk about their serious illnesses. Together with government and other organisations’ health campaigns, backed up by the rise of social media, the ‘C Word’ is not just ‘big’, it’s fantastically huge! Consequently, more people know and understand the disease and more is known about the science of the disease. This is not only creating better diagnostic tools and treatments, but has introduced a raft of preventative measures and messages resulting in increased awareness amongst the general public. Bloggers do their part too 🙂 – particularly with the rare and less common cancers which sadly don’t make the headlines enough.
If you look at the statistics for Neuroendocrine Cancer, there is both an increased incidence (rate of occurrence of new cases) and increased prevalence (living with the disease). The increased incidence is most likely due to better diagnostic tools but some credit must be given to better awareness (medical staff and the public). Increased prevalence is most likely due to a combination of better treatments, mostly good prognostic outcomes and people are generally living longer.
I’d like to focus in on awareness as that is the aim of my blog. I was diagnosed in 2010 but I didn’t really come out of the ‘cancer closet’ until 2014 and this resulted in a number of lifestyle changes plus the creation of this blog. I have plastered what some would call personal and private information all over the internet in the name of awareness. Some people might have raised eyebrows about some things I published. However, I genuinely believe that the only way to draw attention to the issues faced by Neuroendocrine Cancer patients is to tell the story of Neuroendocrine patients in factual, educational and no holds barred ways. I also like to put a positive spin on everything and where appropriate, a smattering of humour. I do this not just because I think of myself as a positive and humorous person but because I think there is still a lot to be positive about and humour is medicine as far as I’m concerned 🙂
Back to ‘The C Word’. If you want to be inspired, if you want to feel positive, if you want to combine these two things with humour, then please watch ‘The C Word’ – the portrayal of the late Lisa Lynch broadcast on BBC last week. This true story was brilliantly put together to display the range of emotions and problems coming out of any cancer diagnosis; shock, anger, acceptance, etc. Moreover, it also covers all the practical issues such as time of work for the patient and the next of kin, holiday insurance, to the effects on close family.
Lisa Lynch took up blogging after being diagnosed with advanced breast cancer. When you read her bio “I’m a cancer bitch but not cancer’s bitch” – you just know you’re dealing with someone positive. There are few TV programmes that I’ve watched in total silence but this was one of them. For me it brought back memories of my own experience of going through diagnosis and treatment. The issues of time off, holiday insurance, effects on family and friends, trying to establish a new normal, all resonated. I’d be lying if I said I didn’t shed a tear (or two).
I guarantee you many women will have checked their breasts for lumps during and after watching that programme and as a result, many will have gone to see a Doctor. Awareness saves lives.
Watch the programme here (click)(UK only sorry).This programme is only available on BBC iPlayer until 28 May 15
You may remember my article entitled The trouble with the NET (Part 1)which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.
Many well meaning people will send you articles they saw on the ‘NET’ about this and that treatment which claims to cure cancer. They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks. The vast majority of these ‘suggestions’ will be lacking in any proper and formal scientific research and there is normally a product or book for sale attached to the link. In some instances, these ‘miracle cures’ can actually be dangerous for some.
In a follow on article, Cancer Research UK warns of the risks in Alternative Therapies which is written in a similar vein. I pay great attention to what these guys say. I know from my association with their research capability, that they take an evidence based approach and do not publish these things lightly. Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatment. Nonetheless, any therapy which is not approved can be dangerous to cancer patients.
One bonus and very interesting aspect of their article is that they discuss the Steve Jobs issue of initially opting for alternative treatment rather than conventional, excellently making the point that he did not have Pancreatic Cancer, rather he had a Neuroendocrine Tumour (NET). We all know this, but many newspapers, magazines, TV commentators and bloggers frequently get this wrong.
One of the big selling points advocates of alternative therapies use is to claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better. In analysis, that is a fallacy. It’s easy to get sucked into promises of ‘cures’ and ‘remission’ by using herbal remedies, diets, potent supplement, etc (the list of endless). However, if these things really worked, all Oncologists, specialists and major cancer centres would be advising this too.
“But it works… I read it in the news!”
Stories in the news about alternative therapies are usually framed in the words of a single patient talking about their own cancer journey. But this is neither scientific proof nor any kind of guarantee that a treatment is effective or safe. People pushing alternative therapies frequently wheel out stories from ‘survivors’ who are apparently alive due to their treatments, yet without providing solid evidence to prove it is true, solid evidence that the actual ‘miracle’ drug was the reason for the improvement rather than something else of a previous or concurrent conventional treatment. This raises false hope and unrealistic expectations that there is a hidden miracle cure that can be unlocked for the right price, or by eating exactly the right foods.
Those selling and promoting alternative treatments rarely discuss the risks, especially the biggest risk of all – missing that small window of opportunity to hit a cancer with the best conventional (and proven) treatment possible.
The link to the article is here – I strongly encourage you to have a read – click here.
There’s another article here where a study confirms people who opt for alternative therapy die sooner than those who don’t – read here.
You may also be interested in reading Part 3 of this series where I discuss the FDA clampdown on bogus claims made by those sharing ‘miracle cures’ and what to look out for when you find this sort of thing in your inbox or social media feed.
Be careful out there – it’s dangerous.
You may also like my Neuroendocrine Cancer myths articles – click here
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
I’ve never smoked so I’m reasonably confident my own cancer experience is not related to this type of personal lifestyle. I did, however, grow up in a world where smoking was widespread and a generally accepted behaviour.
We now know that smoking causes more than four in five cases of lung cancer. Lung cancer not only has one of the lowest survival rates of all cancers, but is the most common cause of cancer death in the UK. Shockingly, most of these deaths are preventable, by giving up smoking in time or not starting at all.
Smoking also increases the risk of at least 13 other cancers including the larynx (voice box), oesophagus (gullet), mouth and pharynx (throat), bladder, pancreas, kidney, liver, stomach, bowel, cervix, ovary, nose and sinus, and some types of leukaemia. There is also some evidence that smoking could increase the risk of breast cancer. The anatomy is pretty well covered by the risk of smoking.
I haven’t seen any evidence that smoking increases the risk of Neuroendocrine Tumours (NETs) in the relevant parts of the anatomy listed above but I wouldn’t be surprised if there was a connection or at least an increased risk with certain types and/or locations of NETs. Although years of research have proven that smoking causes cancer, this doesn’t mean that all smokers will definitely get cancer or that all non-smokers won’t. It means that smoking greatly increases the risk of this disease. Smokers are, on average, much more likely to get cancer than non-smokers.
One of my other activities outside of NET Cancer awareness and support work, is my role as a Cancer Research UK Campaigns Ambassador for New Forest West (a UK Parliament constituency in West Hampshire on the border with Dorset). Through this task, which I support in my own time for free, I’ve been helping Cancer Research UK with their various campaigns, in particular, the one to introduce standard tobacco packaging into the UK. Evidence shows that removing all branding and design from tobacco packs makes it less attractive for both adults and children. This is a controversial measure opposed by the tobacco industry and their sponsors. However, it was voted through by the UK Parliament early this year and is currently in a consultation phase. The general election may delay its introduction as law but hopefully this will become a reality in 2015. Clearly the tobacco industry is involved in rearguard actions ‘as we speak’.
When I was given the campaign material to read in Dec 2013, I was totally shocked by some of the statistics provided:
Since tobacco advertising became illegal in the UK in 2002, tobacco companies have invested a fortune in branded packaging to attract new smokers, particularly younger people;
Around 207,000 children aged 11-15 start smoking in the UK every year (6,900 classrooms worth). This means that nearly 570 children are lighting up and becoming smokers for the first time every day. Addiction keeps them smoking into adulthood, where it then kills one in two long-term users;
Two thirds of new smokers start before they are 18 and the vast majority while still teenagers;
Smoking-related diseases kill over 100,000 people in the UK every year. Worldwide the figure is 6,000,000 and projected to rise to 8,000,000 by 2030.
Tobacco use caused 100 million deaths worldwide during the 20th century, and if current trends continue it will kill 1 billion people in the 21st century.
Standardised tobacco packaging (sometimes known as plain packaging), is not a UK initiative. Australia was the first country in the world to introduce standardised packaging for tobacco products in December 2012 and have since reported the biggest fall in smoking for 2 decades. In addition to the UK, New Zealand and Ireland are working on similar legislation. Other countries are considering or have committed to some action including France, EU, Norway, Canada, India and Turkey. Countries said to be opposing such measures include USA, Italy, Bulgaria, the Czech Republic, Greece, Poland, Portugal, Romania, Slovakia and Spain.
You can read more about standardised tobacco packaging at this link here: http://www.cancerresearchuk.org/support-us/campaign-for-us/setting-the-standard-for-plain-cigarette-packaging/evidence-and
For UK nationals, you can help keep the pressure on the government to introduce the legislation quicker by emailing your Member of Parliament – see button labelled ‘Email your MP’ within the above link.
For other readers, you will probably find similar campaigns in your own national organisations and I recommend you read what they have to say.
Thank you for reading! I would love to hear your feedback on this issue so fire away!
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When I started blogging in 2014, it was relatively easy – all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian’s Wall for a local Charity. The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!
In my early blogs, there were several ‘no go areas’ which were either too complex or potentially controversial. I didn’t really have much time to think them through properly at that point in time. However, I’ve since dabbled in some of these areas to test the waters. I’m not a healthcare professional of any sort so I can only talk about my own experiences and how I made improvements to my own issues. Since then;
I suggested that exercise can help – it’s not about how high, how fast, how long, it’s about direction, about going forward;
I suggested that diet and nutrition support can help. Not just about what to eat, also about ensuring you are getting the minimum levels of nutrition into your body.
Clearly there are many other issues involved including but not limited to social support, comorbidities, pain control.
It’s no secret that a cancer patient’s problems can at times go beyond the physical, i.e. the mind can also be affected. My research indicates that any cancer patient is at risk of succumbing to depression and anxiety with one study indicating it could be as high as 40% with an equal split between clinical depression and subclinical depression. The latter is an interesting condition as it’s not as severe as the former but can last much longer. I suspect if I dug deeper, I would find there are other factors at play including (but not limited to) geography, socio-economic and gender. It’s also worth noting that these issues can also affect someone who is living with, or caring for, a cancer patient.
It would appear that studies into depression and anxiety in cancer patients have been a challenge because symptoms occur on a broad spectrum ranging from sadness to major affective disorders and because mood change is often difficult to evaluate when a patient is worried about death, is receiving cancer treatments, is fatigued or is experiencing pain. Living with cancer or depression can be hard (I can vouch for the former) – battling both together must be more difficult. According to Cancer Research UK (one of the biggest and respected names in Cancer), depression and anxiety issues are an important but largely under-recognised problem for people with cancer. Read more by clicking here. And if you listed the unmet needs for NETs, psychological problems would certainly be on the list.
Many people still see a cancer diagnosis as a death sentence but improvements in medical science has meant that fewer people now die of cancer (although certain cancers are still struggling, e.g. Pancreatic). If fewer people are dying of cancer, it clearly indicates that more people are now either living with their cancer or going into remission? The latter is indeed very good news and will have impacted the survival figures greatly.
However, some incurable cancers can also have a good prognosis or outlook despite their ability to put a dent in Quality of Life (QoL). These cancers can provide physical and mental challenges to patients who are living with both the side effects of the cancer and the (lifelong) treatment. One such type is Neuroendocrine Cancer, sometimes known as ‘the silent cancer‘or ‘cancer in slow motion‘ in respect the well differentiated versions. In prognostic terms, there are worse cancers out there, even patients with metastatic disease can have good prognostic outcomes and live fairly normal lives with the right treatment. But each person is different and there can sometimes be a varying cost in terms of quality of life and risk of patients succumbing to depression and anxiety issues. Many people not only live with Cancer but they also live with the consequences of Cancer.
As a Neuroendocrine Cancer patient, I have at times felt like my mind wasn’t coping very well despite a healthy and happy outlook – not forgetting that I look so well 🙂 I’m good at bottling things up so it’s easy for me to put on a façade. However, I’ve always managed to give myself a proverbial ‘kick up the backside’ if I feel a drop in my levels of focus and determination. It’s too easy to be constantly fearfuland blame every single ache and pain on my cancer (because most of the time it turns out not to be) – this just increases the fear. I’m generally a POKER FACE type of guy and some might say that is dangerous! However, I’m not complacent nor am I in any form of denial. One of the key reasons why I study my disease in some detail and work with my medical team prompting them as my own advocate where I think there is a strong connection, is so that I don’t become complacent whilst at the same time I don’t automatically assume any aches and pains are caused by the cancer. NET Cancer needs an element of pragmatism now and then! I also think exercise and nutrition can help body and mind – thus why I listed those factors above.
Does mind over matter help? I don’t believe a positive attitude helps cure any condition but I believe it can be helpful for anyone with cancer including those living with incurable diseases such as Neuroendocrine Cancer.
I’ll have Neuroendocrine Cancer forever – I cannot change that, so I’ll just have to deal with it. Quality of life is therefore important – I need to work to maintain and improve where possible.
If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor. In fact, you may appreciate this excellent videofrom NET Patient Foundation presented by Kym Winter helpful. She is a qualified Psychotherapist and Counsellor – click here.
I also liked this videoby Dr Michael Burke, a Psychiatric Oncologist – click here
You may also enjoy my article “8 tips for conquering fear” which is written by a patient for patients and also features both the above videos.
Thanks for listening
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