Let’s talk about living with NETs

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Graphic courtesy of Ellie McDowell

There’s a frequently asked question on certain forums along the lines of how will I die of my Neuroendocrine Cancer?. Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don’t know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post!

I don’t tend to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, 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 has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)

Here’s a much better question people should be asking ……How do I live with NETs?”

Fear won’t stop you dying but it might just stop you living.

Thanks for reading

Ronny – 8 years and still a newbie

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I may be stable (..ish) but I still need support and surveillance


cancer-patient-support

With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal.  The surveillance must continue in case of a recurrence.

It’s important to understand that ‘Stable‘ simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time.

One of the disadvantages of ‘incurable but treatable‘ is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’. 

I also believe patient expectations need to be managed although improvements are still possible.  In my own experience, however, this does not happen overnight. Patients must be willing to accept a new normal or status quo on the basis that things are never likely to be the same again. Many patients with chronic conditions will have minor irritants and Neuroendocrine Cancer patients are no exception in this regard. 

HOWEVER …….. The specialist view of ‘stable’ will be looking at tumour and hormone makers.  The patient is likely to have a much wider view of ‘stable’ and it will include ‘quality of life’ markers. 

So ….what is stable for me?

Looking at my medical documents, I was not really considered ‘stable’ by specialists until 2 years after diagnosis. The measure of that is in scans and markers.  Nothing has grown since 2012 although I have a thyroid lesion being tracked on watch and wait.  My key NET markers have been solidly in range since 2012.  Today, my on-going monthly treatments are well organised, I’m in touch with my specialists and undergo several surveillance checks beforehand every 6 months currently. I get regular/normal illnesses and those are logged in my diary to look for any clues or associations with anything else. In between consultations, I can call in for urgent help if need be. Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated.  I feel well, I look well (but you should see my insides ….). I think I’m on top of things.

I think the UK (for example) is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Specialist Nurse – some areas are better served than others. In my opinion, NET Nurses can prove invaluable in on-going care scenarios. In fact, I was very pleased to see a NET Nurse attending and taking a greater role in my most recent MDT meetings.  I’m fairly certain other countries have similar setups.  Some countries may not be so fortunate and are struggling to get the right resources – I can see this on one or two ‘corporate’ Facebook and Twitter sites. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more!  The same could be said for NET Specialist Dietitians who are key to providing quality of life improvements. In fact, I was delighted to see this recommendation at ENETS 2018 in Barcelona. 

recommend dietitians
More dietitians for NETs?

OK … I may be stable (ish) but I still need support!

However ……. my stability does NOT mean I’m complacent.  For minor issues, it’s always useful to talk to a medical professional, even on the telephone. I think of my GP (PCP) as a ‘virtual’ member of my Multi-Disciplinary Team (MDT) and I copy them into any important correspondence between myself and my Oncologist.  They are normally copied in coming the other way (if not I make sure they are). This is starting to return dividends. Whilst my GP is positioned to deal with most of my ‘irritants’, I still believe specialist assistance is required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection. Being your own advocate is useful in these scenarios.  Patient-doctor communication is vital and I find it best to drive this myself. I’m lucky to have direct ‘as and when’ contact a specialist NET Nurse.  All NET patients should have the same.

The best advocate for you is YOU (or someone very close to you)

Although I still need constant surveillance, being stable allows me to focus on QoL and in particular trying to improve on my ‘normal’.  Whilst we are on that subject, did you hear the one about the constipated NET patient?  This article contains a summary of my attempts to gain a decent quality of life.

Although I read patient forums, I don’t necessarily rely on them a lot for my own issues. On sporadic one-off forum questions (…..and not forgetting that hundreds of symptom questions are related to ‘the gut’), the discussions can end up with many different and confusing answers. Plus there are so many patients who are at varying stages of their disease, use different types of healthcare systems, have had different treatments and have different types of NET, have other issues going on, it can end up as a tangled mess as people try to compare apples with pears.  To help with this issue, I created my own private Facebook group and I try to emphasise these issues through moderation. 

I will not compare myself to strangers on the internet
remember all patients are different

I like to do my own research as I want to be in control of my own QoL.  One of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e. managing the gut). For many NET patients, particularly those who have had surgery and/or persisting syndrome, diet and nutrition is a  huge challenge as it can very often mimic other problems which can present with a wide range of ‘syndrome like’ symptoms such as fatigue, weight issues and even anxiety. More somatostatin analogues and other drugs might just be the wrong response in certain scenarios. I feel there is a huge gap in the follow-up treatment for people who suffer this as a consequence of their cancer. For example, and to the best of my knowledge, there is only a few dedicated and practicing Neuroendocrine specialist dietician in the whole of the UK (…..I’m willing to be corrected here). Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I personally do not believe this is the best or optimum solution. There are very specific issues with NET Cancer patients that are bespoke and complex to the point that conventional cancer diet practices may not fully apply. It’s not just about what you eat………..

NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements where required, post-surgical advice, managing the long-term side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or the consequences of their treatment. Personally, I think more resources and research in this area would be useful.

This gap is one of the reasons why I asked Tara Whyand (a dietician with specialist Neuroendocrine Cancer knowledge) to help me co-author a series of blogs to focus in on a few key areas.  I didn’t want to say what someone should or should not do, I wanted to say why this is an area to watch.  The ‘why‘ is important as it helps you in your efforts to distinguish the effects of a syndrome or a co-morbidity from the effects of your treatment (if applicable).  I find this knowledge helps me to think ‘outside the box’ rather than just accepting ‘it’s the syndrome.  I personally feel I’ve been able to harness this knowledge to improve my QoL.

Article 1 – Vitamin and Mineral Challenges

Article 2 – Malabsorption

Article 3 – Gut Health

Article 4 – Food for Thought

Article 5 – Pancreatic Enzyme Replacement Therapy (PERT) (includes a Q & A session with Tara Whyand)

The following blogs may complement this nutrition series:

The Diarrhea Jigsaw

The Constipated NET patient

Serotonin

I now take food with my pills

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’

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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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Neuroendocrine Cancer Forums: frighteningly good or good at frightening?


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OPINION

When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn’t really a major player, more of a ‘lurker’. I found it quite ‘cliquey’ and I should have listened to the initial advice of that fellow patient!  So I left it.

Joining Forums

In 2013, I joined several large Facebook closed groups which function as forums. After 4 years, I felt more experienced and knowledgeable and I wanted to learn more about the disease to help with my blog activity.

Be prepared!

I really was not prepared for what I found in these groups. It seemed many people were in a much worse condition than me (I now know this to be incorrect) and I was shocked by some of the things I read (and saw) and I considered leaving pretty sharpish – quite frankly, the content of these forums was stressing me out!

Remember, forums don’t represent the whole NET Patient population

It suddenly became obvious to me that the actual ratios found on forum sites do not equate on the outside, i.e. even on the bigger forums of 2000+ this is not a good representation of the NET patient community when you consider there must be well over 500,000 patients worldwide. For example, on forums, it often appears that everyone has some form of ‘syndrome‘ when in actual fact the ratios are much much lower. If you agree with the logic above, this forum ratio of patients is a particularly relevant point for new forum members who, upon joining, will suddenly find that every symptom in existence seems to be continuously (and repeatedly) associated with the disease, causing further distress.  If you think about it, on a forum, more people are likely to say “yes I have that problem” than “no I don’t have that problem” in response to any question. Regardless of how bizarre or outlandish the question is, someone will nearly always respond saying they also have that issue ……. cue epidemic.  This can unfortunately make it seem more prevalent than it actually is. Perhaps more patients should say “no, not me” to prevent these frequent perceptions and misunderstandings.

Diagnosing the Undiagnosed

There are also many ‘undiagnosed‘ people on forums searching for clues for their long-standing illnesses. This isn’t surprising as Neuroendocrine Cancers are notoriously misdiagnosed as routine ailments, in some cases for years. I guess the ‘power of the internet’ leads these people to forums.  These cases tend to come and go and you can almost sense the frustration of those who believe they have NETs but are not yet medically diagnosed with any illness. I really feel for someone with any illness that cannot be pinned down. I feel helpless that I’m unable to wave a magic wand. However, I can’t help feeling that some might be convincing themselves they have Neuroendocrine Cancer by what they read, or perhaps have even been nudged (further) into this belief by their well-meaning audiences who, like me, are simply trying to help?  Only my opinion.

Be prepared for different opinions

If you want a very wide-ranging set of opinions on very basic NET information – join a forum.  Nothing is a myth, everything is possible, even the seemingly impossible. Much of this misinformation starts on forums, tne spreads to other forums and the anecdotal takes over from fact. As difficult as it may seem, moderators and experienced/knowledgeable members need to correct blatantly incorrect statements to maintain group integrity and educational aims (where applicable).

Be prepared for fake healthcare news, celebrity fad diets, miracles cures

Social media including patient forums is a targeted medium for those who wish to spread fake, unscientifically proven, believable and solicited news and articles, in many cases to sell a product, i.e. a book, a video, a celebrity diet or product.  Some of this information may result in harm to some patients. Very often, administrators of forums lack the knowledge and initiative to prevent these posts making it to their communities. In many cases, this (mis)information will be shared by another patient or family member who may just be well-meaning but has fallen for the trap set by the purveyor of this clap-trap. This can lead to great upset or fear for those already in a delicate state. Check out my 3 articles on the subject:

Part 1 – Fake News
Part 2 – Alternative Therapy – what’s the harm
Part 3 – Miracle Cures

Be prepared for toilet conversations

A much discussed topic and sometimes not for the very squeamish.  I’ve seen some unusual pictures on forums but the worst by far was one of someone’s faeces.  I struggled to understand why anyone would post that – moreover, I was amazed the site administrators allowed it.  No thank you!

Be prepared for religious conversations

There is a lot of spiritual and religious content on certain forum sites. I’m not a religious person but I totally respect that many people are. However, on some forums, there can be a very heavy religious and spiritual message presence. This may not be everyone’s ‘cup of tea’, particularly if it consistently overrides the main aims of the group.

Be prepared for strange behaviours

One of the most hideous aspects of forums is the appearance of ‘on-line bullying’ or arguments which happen now and then. Be prepared to see disagreements and many ‘one to ones’ or ‘one to manys’.  However, definition is important here. Cliques of core users can appear overpowering particularly when someone disagrees with one of the ‘clique’. All this is going to do is to drive people away and make people more reluctant to ask or answer a question for fear of upsetting someone or being ridiculed. The vast majority of forums I’ve experienced, have little or no moderation and inadequate or untimely policing. A well-administered site will deal with it quickly and have round the clock moderation given the international nature of many forums. Administrators need to stamp on this sort of behaviour when it happens and not 48 hours after the event.  I once left a forum after very politely suggesting a different opinion to the ‘reigning clique’ which resulted in a coordinated and personal tirade against me (i.e. online bullying).  The posts were removed, indicating the administrators agreed with my complaint.  My advice is not to join an unmoderated forum, and if you see this type of issue and sense they are not being resolved, you should consider leaving that forum to prevent unnecessary stress. In another but different example of bullying, I was blocked from one US site without notice or reason and to this day I have never found out why, despite trying very hard (…..although I suspect ‘politics’).

Be prepared for masses of ‘tat’

Another area which puts me off most NET forums is the masses of ‘memes’, pictures, quotes, miracle ‘snake oil’ cures/medical myths and stuff you see plastered all over the internet – these things are the ‘junk mail/spam’ equivalent on Facebook and some can also be a security problem. I’m very surprised the administrators allow so many of them as they clog up the timeline making it easy to miss an important post and they can present security risks for those who click on them.  I get enough of this on my personal Facebook – no thanks!

Be prepared for masses of black and white striped stuff

I don’t do zebras, I’d rather talk with people and the things that actually matter to those people.  I therefore find myself strongly objecting to being described as a ‘Zebra’ and part of a ‘herd’.  As soon as I sense a ‘zebra infested’ site, I’m off straight away.  The NET community sometimes appears so infatuated by this aged, out of date, and misleading analogy, that it denies the correct level of support to those who are asking for help.  For example, side by side, a post (say) where someone is asking about side effects of a treatment or how to improve quality of life, or someone just asking for help, is likely to get much less views/likes/comments than a picture of a Zebra or something with stripes …… quite simply, that is not right and is why I won’t allow it in my own group.

The strange thing is that in contextual terms, the zebra represents the disease, so when someone says “I am a zebra”, this is in effect saying “I am a disease” or when they say “Dear Zebras” they are saying “Dear Diseases” or my pet hate, the cringeworthy “Dear Fellow Diseases”. The problem is that the NET community has become “too cute” with the term and it now lacks any ‘kerb appeal’ to the outside world (who should be the key recipients of awareness messages). It’s really holding back NET Cancer external awareness and is a PR disaster area. Even NET specialists are denouncing this infatuation, with one saying “we’re beyond that now”.

I have my own strategy for spreading awareness which seems to be well received and more understandable to EXTERNAL audiences and many NET patients. Moreover, my awareness strategy covers a much bigger spectrum than offered by the narrow and blinkered diagnostic messages inferred by this aged, totally useless and often misquoted equine analogy. I say Let’s stop dehumanising NET patients.

And, by the way, NET Cancer is not as rare as we keep being told.

Don’t let forums be your life

I’ve recently cut down my membership of groups, not only because they were not a good fit for me but because forums were actually stressing me out, mostly due to all the issues outlined above. So, I’ve left most groups, remaining in those which fit my requirements.  I advise you to do similar if you value your sanity.

So …………….

Are forums ‘frighteningly good’?

There can be a lot of positive outputs from many forums and to be truthful, I have learned a lot and made some online friends too.  I’m sure the forums are very useful for some people who are able to prioritise and filter to take what they want from the sites. Some people also use them as a lifeline due to a lack of support in their local area. In that respect, they are frighteningly good.

Are forums good at ‘frightening’?  

Yes, they can be good at frightening for those already in an anxious or delicate state or who want to discuss issues in a slow, deliberate and non-confrontational manner without being inundated with tat, myths, abuse, etc as per above.  I like to help people but for the first couple of months after joining forums in 2013, I found myself feeling totally helpless with the sheer number and range of problems.  Unfortunately, well-meaning people give totally different and dangerously conflicting answers, even to simple questions. I was also deeply concerned that ‘miracle cures’ which I knew to be internet myths were not challenged by the group administrators.

I ended up very frustrated even though I learned to prioritise and filter – I just felt bad that the questioner was getting no answer (50 different answers is no answer) or the fundamentally wrong answer. It also infuriates me to see a pathetic response to a cry for help right next to 100 likes for someone’s zebra coloured fingernails.

Summary

I now receive dozens of messages/emails every week but I find myself increasingly hesitant to recommend people I don’t know too much about to certain forums. Don’t get me wrong, I think some forum sites do a great job but they can be pretty frightening places for the unwary (and on occasion…. the wary!).

Thanks for reading

Please note, since writing this article, I have established my own group and my aim is to minimise the issues above as much as possible in order to focus on education with a supporting slant.  You can join my group by answering 2 simple questions. Click here

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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Read my Cure Magazine contributions

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

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