There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Thousand of people are diagnosed with cancer every day.  Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services.  Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and under surveillance for a period (normally 5 years) and then declared in remission.


The problem with certain cancer symptoms is that they are not always clear cut.  For example, take symptoms such as abdominal pain, diarrhea, weight loss, or fatigue – those can be caused by a whole host of things, many of which aren’t even cancer. It’s difficult for any doctor to work out the cause of such things let alone which tests to send them for – they can be really difficult boxes to tick. Worrying they can also be really easy boxes to tick for illnesses such as IBS, indigestion, menopause.

However, Neuroendocrine Cancer forms an increasing number of these diagnoses thanks to greater awareness, better diagnostic tools and more accurate reporting systems, including the ability to get the correct cancer type into the statistics.  However, although numbers are on the increase, it doesn’t necessarily directly relate to a better diagnostic experience – that is clear from the third reason I outlined above. Many people are still diagnosed too late. In addition, the scenario I outlined above is far from being a normal experience for a Neuroendocrine Cancer patient.

Neuroendocrine Tumours or NETs for short, is one of a number of ‘hard to detect’ cancers because many patients present with one or more of these vague symptoms.  It’s also one of the reasons why they are normally found at secondary care institutions and perhaps after several visits to a physician involving journeys back and forth between primary and secondary care before the diagnosis was finally made.  And then there is the  thousands and thousands of ‘undiagnosed’ either stuck in the diagnostic system or not yet aware they have NETs.

So what can be done to improve the diagnoses of ‘hard to detect’ cancers such as NETs? I don’t have any real answers for you although I have postulated a number of times about where we might focus in terms of education.

I’m fairly certain that medical science will come along with novel ways of helping but that is somewhat downstream.  If only a referral to a specialist could actually be a referral to a team of different but highly coordinated specialists – a bit like a Multi Disciplinary Team (like a ‘Tumor Board’) but operating at the pre-diagnostic phase with quick access to all the regular diagnostic tools without any further referrals. That would surely help cut down some of the ‘ping-pong’ visits between primary and secondary care and a team of experts is more likely to ‘think outside the box’ than a single specialist who is focused only his or her ‘speciality’.

In the meantime, if you see someone ticking a box, make sure you know which box is being ticked and challenge it if necessary

Thanks for reading

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

 

 

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Neuroendocrine Cancer smoke and mirrorsIn a previous life, I used the term ‘smoke and mirrors’ quite a bit.  I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail.  Sometimes there was an element of ‘covertness’ or a ‘hidden agenda’.  It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late.  Some of you will already be seeing where I’m going with this line of thinking – if so, you worked out my hidden agenda!

‘Smoke and Mirrors’ is basically a term connected to the art of deception, a con trick, a way in through confusion and trickery (think magicians on TV!). 

Whilst certain cancers can appear with precise symptoms and leave you under no illusion what you’re facing, others can be a bit more circumspect – Neuroendocrine Cancer can be one of those.  It will fool you into thinking you’re not even ill and even when it puts its head above the parapet, this can come over as a routine illness and/or vague symptoms which will deceive both you and your physicians.   Thus why awareness is really important.  I won’t repeat my key messages but you can find them here in my blog entitled “Neuroendocrine Cancer can be silent – but it doesn’t mean we should be” – the more these posts and ones like it are shared, the quicker we can discover the hidden agenda. 

I have another hidden agenda!  I was inspired to write this post by my friend and blogger Shannon – she writes a blog called ‘A tale of two tumours’.  I really like this blog because there are no hidden agendas, what you see is what you get and she has catchy titles.  I also like Shannon because she has a great attitude despite the fact that she is probably still looking for the ‘hidden agenda’ or at least bits of it (then again perhaps we all are?).

Shannon has one of the uncommon variants of our disease, one of those tricky cases it would seem.  Her issues started some time ago and she was eventually diagnosed with Cushing’s Disease (see my Syndrome blog).  She has previous issues with pituitary, parathyroid and recently diagnosed with a Thymic NET.  She believes there is a potential connection with MEN1 (see my blog Running in the Family) but this is currently dismissed by her physicians.

There is potentially a new problem outlined in her latest blog which inspired me to write this post.  She has a very strange symptom in that she can smell smoke despite there not being any smoke and this happens in different locations.  Her latest blog is her story about this symptom and what happened next.  Excuse the language but I would be frustrated too!  Read the blog ‘Where there is smoke …..’ by ‘clicking here’.

I wish Shannon well and hope she gets some answers – no more tumours please.  You are a survivor!

Thanks for listening

Ronny

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Never mind the Bollocks


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As it’s Testicular Cancer Awareness Month, I thought I’d share a personal story with you.  This is something regarding my own diagnosis and something as yet unpublished.  I don’t tend to share some very personal stuff but this is on the boundary of that rule and there are some important messages to be teased out.  For those who follow my blog in detail, you will remember the post entitled “Neuroendocrine Cancer – Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences”.   As you can see from the title, I got hooked on a bunch of synonyms (small s) that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else.  You’ll note they all begin with the letter ‘S’ except ‘Comorbidities’ and ‘Coincidences’.  These 2 were actually retrospective add-ons to the blog title and there is a potential overlap between both.

Life is full of coincidences and I’m certain this is also the case with issues NET patients have from time to time.  There is a high possibility that some things which were going to happen health-wise before NETs came along, will most likely still happen and it can often seem like the NETs have some causal effect.  As my friend Dr Eric Liu says ‘Even NET patients get regular illnesses’.

I also suspect the same thing can happen pre-diagnosis and if you’re unlucky, during the diagnostic phase.   This sort of event has the potential to confuse an already confusing diagnosis!  So here’s a story about my ‘COINCIDENCE’ which eventually turned out to be a ‘COMORBIDITY’.

At the beginning of 2010 (remembering my diagnosis was July that year), I did what all men should regularly do – I checked my ‘chaps’ for lumps.  Sometime in January, I got the feeling my left ‘chap’ was bigger than the right and I monitored that for a few days.  Eventually, it was patently obvious there was an abnormality.  I immediately went to my GP and he diagnosed a hydrocele.  Apparently these are quite common with men.  He was able to quickly work this out by shining a torch through the offending gonad area and as the light came out the other side, this was confirmation it was excess fluid.  He said it might go away on its own but explained there were medical procedures to correct it including fine needle aspiration (not normally a permanent fix) or surgical repair (the most permanent fix).   I left it for a few weeks and as time passed, the size of my left ‘chap’ increased.  It became really uncomfortable and painful so I asked to be referred to a specialist.  Bear in mind at this point, I still didn’t know I had Neuroendocrine Tumours burrowing away inside me for years.

Fast forward 1 month, the hydrocele is not yet sorted and I’m speaking to a specialist having been referred for a low hemoglobin score (the trigger for my NET diagnosis).  At this point, I’m convinced there is a connection and amongst the plethora of tests and checks, the specialist also carried out a fine needle aspiration of my left ‘chap’ (I can hear the male audience wincing). The fluid was sent off for testing and subsequently returned negative.  My left ‘chap’ was now back to normal (every cloud…..). By the way, the hydrocele returned around 2 months later.  I eventually got the date for my hydrocele surgical procedure (hydrocelectomy) but decided to postpone it to sort out another little matter …… Cancer!

I eventually got it repaired in Sep 2011 after 14 months of NET treatment and had no issues since.   Now…… I can almost hear the cogs turning …… the testes are an endocrine organ etc.  I’ve been through this too and I was still suspicious for a year after diagnosis. However, I’ve been categorically told there is no connection and there is nothing showing on ultrasound, CT scan or Octreoscan.  4.5 years later, I’m happy there was no connection 🙂

However, I did my duty, I checked my chaps, found an issue and fortunately it was nothing too serious. Crap timing though!

Check em’ lads!

Thanks for reading

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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Dr Google will see you now

 

Searching your symptoms on the internet is

Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA ‘Alexa’ to look for me!  However, you need to be very careful in acceptance of what is credible information and what isn’t.

As a relatively experienced health blogger and activist, I like to think of myself as ‘internet savvy’, so I occasionally find myself using ‘Dr Google’ to diagnose my aches, pains and unusual feelings (and I confess to using it to help others).  I mostly find there are no real or definitive answers online for patient issues.  Although I seem to learn something on each piece of research, I also find some really worrying stuff.  Some symptoms can have dozens of reasons and I often realise how difficult it can often be for a doctor faced with unusual, vague and nonsensical symptoms!

On a recent online symptom check for lower left abdominal spasms, I discovered I was pregnant with an alien baby!  

The internet is really powerful but also really dangerous.  For example if you look up “best treatment for cancer”, you have an astonishing 300 million offerings. Right there with rigorous, evidence-based sites, there are those offering fermented foods and DIY cancer cure kits (e.g. fake healthcare news and cancer myths). Worried patients sometimes need help to distinguish between sensible advice and fanciful claims/ miracle cures.

When I combine my own experience with what I read on patient forums, I can see that internet searching is not for the faint of heart.  Some people are already in a state of anxiety before they started searching Dr Google’s archives, and what they find has probably made their anxiety worse.  In fact, the rise of the internet has created a new term for those who worry themselves sick and continually misdiagnose symptoms on the internet –  ‘Cyberchondriac’. 

However …..

Even when we know ‘googling’ our symptoms won’t end well, we don’t seem to care, we just need answers!  Searching authoritative sites is therefore really important and the availability of proper medical information online is actually putting more power in the hands of patients.  It’s how we as patients exploit it that is really important.  Just as you can find examples of ‘cyberchondria’ online, you can also find examples of patient power in a doctor’s office.  Worryingly, you can also find examples of ‘Dr Google’ being right after being dismissed by real doctors, sometimes resulting in patient illness or even death.  

The medical community need to accept that searching for more information is a natural patient instinct, not a slight against one’s doctor. The profession will have to get better at educating the next generation of doctors now that Dr Google is here to stay and, I think, to help. That said, I don’t believe the internet will ever replace the profound human dimension of the doctor-patient relationship. 

Google-doctor-mug-300x300

Tips for online searching:

1.  Don’t actually use internet search engines if you can help it, go to a reputable site and then search that. For NETs try RonnyAllan.NET

2.  Try to be specific as possible because vague search terms will result in frightening answers, and in practice any symptom can be read as a sign for nearly every single horrible illness, or a worsening or recurrence of an existing condition.

3. Less common conditions are less common, and minor symptoms often resolve themselves in time. If you have more worrying symptoms, or if your symptoms are changing or progressing, then go ‘offline’ i.e. visit your GP or primary care facility. If you’re sure of your facts, be assertive until you’re convinced otherwise. However, accept that the internet may be wrong when you seek medical help. 

5.  If you’re someone with an already diagnosed serious illness, the worry that goes with that is quite understandable – check out my 8 tips article.  However, the same tips apply although you may now have established your own specific sources of advice in addition the general health areas. 

6. Charities and associations for specific conditions are also a good information source but just note they may not have the best or up to date simply because they have been granted a ‘charity’ or equivalent status, so be careful, I’ve been some complete rubbish on these sites.  Patient forums can be ‘frighteningly good’ but they can also be ‘good at frightening’. Personally, I try not to compare myself to strangers on the internet.

I will not compare myself to strangers on the internet
Graphic courtesy of Emily McDowell

OK, the lead graphic is slightly ‘tongue in cheek’ but for those who are very anxious, it’s a reality. I can see from my own group that many Neuroendocrine Cancer patients have become very adept at searching online – useful because many still need a lot of help.

Be careful out there it’s dangerous.  I have a private group for patients and caregivers where I like to ‘keep it real’. Check it out here.

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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My Diagnosis and Treatment History

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

patients included