Neuroendocrine Cancer – a difficult jigsaw

NET Cancer Jigsaw

A couple of years ago, I received a request from a reader asking if I would write an article about all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn’t associated with NETs.

Although I chuckled and raised eyebrows at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task.  I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it’s an almost impossible task for a wee Scottish guy with less common disease 🙂  I also started to suspect that even the world’s top NET experts had not accomplished it either.

Here’s a picture of my work to date:

Book of NETS
A book listing all the possibly symptoms of NETs (clearly I’m joking with you)

I have, however, dabbled in attempts to work out my own problems over the past few years. NETs can present with a ‘syndrome’ – a bunch of symptoms normally caused by excessive hormone secretion, some of which are particularly vague and can sometimes continue to cause issues after treatment and beyond – it’s a real witch’s brew of symptoms. They can also cause non-syndromic issues pertaining to treatment side effects and it must also be noted that even NET patients get regular illnesses which adds to the issues healthcare professionals and patients face in monitoring NETs.

In my article “Neuroendocrine Cancer Syndromes – early signs of a late diagnosis”, I focused on the key symptoms experienced pre-diagnosis and then discussed how you might go about sorting out the symptoms from main side effects post treatment (another regular conundrum for most).  On a similar subject, you might want to check out my 5 E’s blog for carcinoid syndrome. I also compiled an article about the source of flushing and diarrhea given there were many differential diagnoses and not just syndromes.

NETs vs Other Illnesses

Adding another jigsaw piece to the issues with cancer and side effects – common comorbidities (many of an endocrine nature) can arise simultaneously. Is it connected with NETs are just another illness to manage alongside?  All of these factors can make it really difficult to determine the source of the symptoms.  I’m always conscious that the majority of NET patients are in their 5th decade onward and at an age where things start to go wrong quite naturally due to ‘time’ and ‘wear and tear’.

Here’s one classic example of this problem, I can see many people on forums also have diabetes (an endocrine disease). In the United States alone, nearly 7 million people have undiagnosed diabetes, according to the American Diabetes Association.  I can also see from the news in UK, that this is becoming a much bigger deal too – a report published in Feb 2018 claims that diagnoses have doubled in 20 years.  I’ve used the diabetes link as an example, there will be many other very common factors at play, e.g. hypothyroidism an age and gender relation issue.  It is certainly possible that many of the problems people face might just be an as yet undiagnosed/underlying condition, unconnected with NETs. To quote the great Dr Eric Liu, “even NET Patients get regular illnesses”.  Working it out is rather difficult though. Sometimes pragmatism is required. 

Syndromes vs Side Effects of Treatment

On forums where most people have a diagnosis and are undergoing treatment, there is regular discussion and Q&As about the source of symptoms, i.e. are they a result of a functioning syndrome (i.e. a consequence of the cancer) or something else?  For example, some people complain they still have (so-called) carcinoid syndrome diarrhea after bowel surgery………that needs some careful thought and understanding before coming to what might just be the wrong conclusion, particularly if all tumour markers are normal.  I have lost count of the number of times someone has asked about a symptom on a forum and got 50 different answers. One of the reasons why forums can be good at frightening rather than frighteningly good.  Personally, I never compare myself to strangers on the internet. I just hope most people are using the forums as ‘sounding boards’ and are simultaneously addressing these very complex issues with their doctors when they are genuinely concerned.

I really feel for anyone who is going through a difficult diagnosis or has been diagnosed and then continues to have numerous problems after initial treatment.  I also have a little bit of sympathy for primary care medical staff on the basis this is just one of over 200 types of cancer, many of which have wide age groupings adding to the complexity and difficulty. Moreover, many of the symptoms experienced by NET patients on analysis look very similar to everyday illnesses and other ailments. And if that wasn’t demanding enough for doctors, many patients present with already established and diagnosed comorbidities (other illnesses) which add another level of complexity. These difficulties can then continue throughout treatment. It can be a real challenge and I’m sure even Doctors can be totally flummoxed on occasion by patient presentations.

Summary

It is extremely difficult to “sort out the symptoms” when faced with multiple locations/tumour sub-types, multiple treatments causing multiple side effects, multiple side effects causing multiple symptoms, multiple comorbidities with symptoms similar to cancer syndromes and treatment side effects (and vice versa).  This disease can be very individual and what happens to one might not happen to another. Although we hope doctors generally take a holistic view when treating NET patients, I have a view that sometimes focussing in on a particular symptom might occasionally be a more effective route (the bottom-up approach – pun not intended!).  When eating an elephant, take one bite at a time!  It’s useful to know about the range of tumor markers and hormone markers – read more here.

 

One thing I have learned  ……educate yourself to the best of your abilities.  This will help you to better advocate for yourself.  Improvements are possible.

Neuroendocrine Cancer is a very difficult jigsaw and you sometimes need to look very hard for the missing piece!  The ‘missing piece’ can be variable and very individual, i.e. a NET specialist, access to a particular treatment or even just more support or access to support information that works.

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

patients included