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 overly 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 after the reigning clique found I didn’t want to be part of their pity party.
p.s. by “Forums”, I mean any online group.
Joining forums/online patient groups
In 2013/14, 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.
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 really stressing me out – I couldn’t cope with the number of problems people were reporting.
Forums don’t represent the whole NET Patient population
It eventually 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 3000+ this is not a good representation of the NET patient community when you consider there must be well over 1 million 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 by 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.
Be prepared for incorrect statements and wild assumptions which are not evidence-based
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 and much of it is misinformation, unscientifically proven. Much of this misinformation starts on forums, then spreads to other forums and the ‘anecdotal’ takes over from fact. As difficult as it may seem, moderators and experienced/knowledgeable members need to (politely) correct blatantly incorrect statements to maintain group integrity and educational aims (where applicable). These ‘forum myths’ must be corrected in an effort to stop the spread of this information virus.
A few examples: Given that Neuroendocrine Neoplasms are a heterogeneous group of cancers, it is not safe to assume that everyone will die soon or everyone will live forever. It is not safe to assume that everyone will be prescribed somatostatin analogues. It is not safe to assume that everyone on the site is from the same country as you and are/or using the same healthcare system. It is not safe to assume that every case will metasasise, additionally, it is not safe to assume that everyone has micrometastases (“you can’t see them, but they are almost definitely there”). It is not safe to assume that everyone will have a recurrence (regardless of the stage). It is not safe to assume that everyone has or will eventually have oversecreting hormones. I could add a million things. And yet, there are people who will tell you all of these things will happen to you. Moderation is required to prevent totally unnecessary anxiety to those reading, but also to prevent these myths from spreading any further. Please take a look at my “50 shades of grey” article.
Diagnosing the Undiagnosed
There are often ‘undiagnosed‘ people on forums searching for clues for their long-standing illnesses. Some of them claim a diagnosis in order to join. 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. Only diagnosed people are eligible to join my own group.
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 a 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 from 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 claptrap. This can lead to great upset or fear for those already in a delicate state. Those who deliberately peddle misinformation and fake news must be removed from forums to protect the majority who only want accurate information. Check out my 5 articles on the subject:
Part 1 – Fake News
Part 2 – Alternative Therapy – what’s the harm?
Part 3 – Miracle Cures
Part 4 – Cancer Kills but so can fake cures
Part 5 – Cancer Food Myths
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!
However, in my own group there have been some really useful conversations about this subject despite the awkwardness and it being a relatively taboo subject.
Be prepared for strange behaviours
One of the most hideous aspects of forums is the appearance of ‘online bullying’ or arguments which happen now and then. Be prepared to see disagreements and many ‘one to ones’ or ‘one to manys’. However, the definition is important here. Cliques of core users can appear overpowering particularly when someone disagrees with one of the reigning ‘clique’. All this is going to do is 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, lack robust moderation and/or inadequate or untimely policing. A well-administered site will deal with issues quickly and have round-the-clock moderation given the international nature of many forums. Administrators need to stamp this sort of behaviour out 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. One of the protagonists even followed me to another group to continue the tirade.
My advice is not to join an unmoderated forum, and if you see this type of issue and you sense they are not being resolved, you should consider leaving that forum to prevent unnecessary stress. Always report these things to the admins first though, it can sometimes be occasionally missed. 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 that 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 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, I noticed 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. I can understand those who wish to respond to a forum member who is having a hard time and worried, and many add mild messages of prayer – however, I believe they must be secular in context as many different faiths make up the membership. Posts with no other context than as a religious statement and/or prayer solicitation, don’t really sit well in health support groups and I note many forums and Facebook groups exclude this type of post in their rules.
Be prepared for masses of black-and-white striped stuff
I don’t do zebras, I’d rather talk with real people and the things that actually matter to those people. I 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. And I’ll go as far as to say that the use of this aged, out-of-date, and misleading analogy actually causes me stress. If you call me a zebra, you’re likely to have the comment deleted at best, blocked at worst. I refuse to be dehumanised.
The NET community appears to be so infatuated by this marketing disaster 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 the side effects of a treatment or how to improve quality of life, or someone just asking for help, is likely to get much fewer views/likes/comments than a picture of a zebra or something with stripes. I once saw a post about someone really struggling with the side effects of his cancer. It had been there for 3 hours and had one comment (my fully researched comment) and zero reactions (likes etc). Yet the zebra sweatshirt post above that person’s post had 57 likes and the zebra-painted fingernail post below had 110 likes and almost as many comments. That is not right, and I won’t allow it in my own group. My own online group is the biggest in the world without this nonsense – go figure.
The strange thing is that in contextual terms, the medical term zebra represents a 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”, “my zebra” decoding to “my disease”; or my pet hate, the extremely cringe-worthy “Dear Fellow Diseases”. The problem is that the NET community has become “too cute” with the term, and it now lacks any ‘kerb appeal’ or understanding to the outside world (…… who should be the key recipients of awareness messages). Even NET specialists are denouncing this infatuation, with one saying, “we’re beyond that now”. One of my followers recently described it as juvenile.
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, Neuroendocrine Cancer is not as rare as we keep being told. This out-of-date analogy is something from the 1940s and the community has failed to move into the 21st century. I have to say this is mainly a North American issue, but pockets of resistance still exist elsewhere.
My views on this will never change. Since starting my own advocacy efforts, these views have resulted in me being ‘verbally assaulted’ numerous times (you would not believe how much) and some advocacy organisations have even given me the ‘silent treatment’ in a coordinated way, which is of course a form of bullying. And it just proves one thing I have said before, this ancient awareness technique has turned into a cult. The delete, remove, unfollow and ban buttons are useful.
Don’t let forums be your life
I’ve eventually cut down my membership in 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 rigidly met my requirements. If groups are causing too much stress, I advise you to do something similar. I say this even though I have my own patient forum in the form of a private Facebook group. However, my group rules reflect the type of forum I wish I had found in the early days, and I work hard to maintain that. Someone once announced they were leaving my group because they felt they had got to the stage where they don’t need to be in patient forums. I was actually over the moon rather than disappointed I was losing a member. I’ve since had a couple who quietly left but took the time to message me for getting them to the point where they felt they could get on with life. That’s great! And anyone who leaves is always welcome back – this happens frequently!
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 over 100 likes for someone’s zebra coloured fingernails. Some people don’t seem to be able to prioritise and filter in groups assuming that every bad thing they read must be applicable to them. That’s not a good thought process to have and I question the viability of an online group for such people particularly one which is badly moderated. Members have a part to play and should be reporting rule breaking to the group admins
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 join forums other than my own. 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!).
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 support slant. I must be doing something right as it’s grown in a relatively short time to be the biggest private NET patient Facebook group in the world. You can join my group by answering 3 simple questions. Click the green box below
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24 thoughts on “Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?”
Liver biopsy proved a low grade tumor – we are starting off with Sandostatin and seeing how things go. First injection today and if the first few days of short acting go ok then we start the LAR next week. There is this bit of me that just wants them to ‘get it all out’ of her gut – but my understanding is that might just make her a lot sicker than she currently is given the extent of the surgery. I hate seeing her with this horrible intermittent stomach pain – and in comparison to other symptoms people talk about its not something that you see online a lot (people complaining of it). The MDT seems to think that SSA will help – and we are all clinging on to that. Thanks for listening!
Difficult area and I’ve seen things on both sides of the fence. This article here is extremely good and may cement your views or put your mind more at rest.
Thanks so much for the message and kind words. I do feel confident with our team and yes, bring on the support. It is strange for me to be on the other side of the clinic room after all these years as a specialist one nurse. Also, I’m not particularly experienced with wordpress yet! This is the blog I started before the drama unfolded this week. https://confessionsofacancernurse.wordpress.com Will continue to follow you with interest!
Thanks, let me know how your Mum gets on? I’m still learning WordPress 18 months on ……. 😀
Hi again. Definite uptake with the Ga68 PET, the known areas had uptake in small int, nodes and liver (both lobes, 3-4 spots). Liver biopsy this week and then (depending on grade) starting SSA. There has been talk of debulking surgery for the gut lesion and node, potentially. Mum is so well right now (except for pretty horrible tummy cramps that come and go). Fingers crossed for a low grade, sleepy tumour.
Most are low grade and reasonably indolent. They’ve probably been growing for sometime if she has mets. Good luck to her with liver biopsy. I hate stomach cramps!
Hi Ronny, I started my own blog a couple of months ago about my experiences as a cancer nurse. Then, major plot twist, my Mum was diagnosed with neuroendocrine cancer in December. We get results of her GaTate PET today. She is being treated by a NET multidisciplinary team within a cancer centre, which is reassuring. Also of course terrifying. I’ll be giving the ‘forums’ a miss for now – I’ve found your blog really helpful. Cheers.
Sorry to hear about your Mum. NETs are very treatable and it’s good that she is being treated at a NET MDT. Grade is very important. Check out my staging and grading post – stage 4 is not normally the big deal it could be with other cancers, this is key information. Ga68 PET can be very sensitive and can sometimes show physiological uptake but hopefully your radiology guys will be experienced. I’ll follow you back, perhaps we can support each other going forward. My Facebook site isn’t a forum and there are many lurkers there avoiding forums. Let me know if you need anything (including which forums to avoid). Good luck and best wishes to your mum.
[…] NET Cancer Forums: frighteningly good or good at frightening? June 11, 2015 […]
I have only recently discovered your blog and find your humor and synthesis of information so helpful! If you are a newly diagnosed carcinoid patient, like me, the forums can be extremely confusing and I will be honest: horrifying! Thanks and keep on writing.
There is a down side to the forums that no one has mentioned. I couldn’t get on to them I was filltered out for some reason. I managed to get on one then was blocked before I ever posted??? I have heard of others at my hospital having same problem.
They thought it was because we didn’t have our own blogs. I now have a different problem with face book so that is totally out.
So please keep up the good work Ronnie as some people can only get blogs. I find yours very interesting because you don’t go over the top about everything. Thanks Ronnie
Christine, I was blocked by one group and despite several attempts to get them to say why, they never did. Extremely rude of them.
I agree with everything you say here. When I need info I am always directed to the forums you discuss. Like you, I felt completely uncomfortable with the tone and horrified that people feel this is the place to deal with such terrible issues.
Me, well I am 3.5 years in, carcinoid syndrome, had liver resection, primary not found but I must have wee tumours lurking as have symptoms. Symptoms fairly well controlled for now.
I am determined not to have my disease define me. Getting on with a normalish life. I just have to ” recalibrate for ground level” now and then. I have been very lucky, my work decided to hold on to me and I now work from home, this has been a mental lifesaver, no time for forums and such.😁
Recently had a discussion with my GP and have told him I will not have every single problem blamed on my cancer. I believe I actually said, it’s not all about tumours you know! I think we had a breakthrough😁
It’s a pity the original message of using the zebra has been lost, from what you say. I’ve never been a herd type person and not starting now . Well done. Thanks for being honest about this, it’s good to know I’m not crazy, well……! Fx
I agree 100% and am counting myself very lucky that I missed the feces photo. Yikes.
Spot on Ronny! I agree with you 100%. I feel the same way.
I agree with everything you’ve said here. If you only read the patient forums, you would think that there are only about 5 doctors who treat NETS in the US and that most people with this disease are in terrible distress. I also like the distilled information I can get from the forums but need to concentrate my efforts on living my life, not worrying about my cancer all the time.
Reblogged this on Ronny Allan – Living with Neuroendocrine Cancer.
Ronny, the link to your post is invalid “Read more of this post” has a date in it. 2015/04/16 and it should be 2015/04/11. This has happened once before on your post announcements.. Something wrong with WordPress maybe.
I found the post and liked it. Yes people assign far too many symptoms to neuroendocrine cancer and yes there are people a lot sicker than me. But I do find it valuable in understanding the human side of our disease.
Keep up the good work, Cy
Ronny, I agree with so much of what you’ve said. I removed myself from some yahoo groups early on for some of the issues you note. One of my pet peeves is the explicit endorsement of particular specialists and flagrant disapproval of others. One of their prized specialists told me over the phone (he hadn’t even seen me) that I was inoperable (Which was not true). And while I appreciate some medical professionals participating in patient forums and trying to put some general and accurate information out there, I feel uncomfortable about broadcast posts where doctors respond to specific, individual questions about personal treatment. But, like you, I have also gotten a lot out of some groups and have appreciated the sense of community. One Facebook group manages to maintain a supportive tone and a nice sense of community and I’ve appreciated connections I’ve made there.
What is the name of the one Facebook group you’ve appreciated?
Always updated, important information…..like the carcinoid/ echocardiogram for June, 2015 Ronny. I agree about the forums and blogs. Nice to filter unimportant and keep it academic. Same as Dr Liu’s website. Keep up the good work!
Could either of you (Ronny or Jean) share how to locate these forums and closed groups? I’m hunting but not finding anything. I hate this isolated feeling of “it’s rare” and good luck. I am in your boat Ronny, I’m more interested in hearing what others have tried and had success with, whose doctors “get it” and meet people who can relate because right now I’m just surrounded by well intentioned people who love me but really are clueless.
I’ll make contact by other means Sarah.