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NET Cancer Forums: frighteningly good or good at frightening?

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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 2014, 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.  As a reminder, the aim of my blog is to spread awareness of Neuroendocrine Cancer, but in a positive way in order to generate both internal and external interest (the latter is a key component of my strategy).

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 and I was shocked by some of the things I read (and saw) and I considered leaving pretty sharpish – quite frankly, it was stressing me out!

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 300,000 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, 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 which can unfortunately and on occasion make it seem more prevalent than it actually is. Perhaps more patients should say “no, not me” to prevent these frequent perceptions and misunderstandings. All of that said, you can pick up some useful information in some of these exchanges but only once the ‘shock factor’ wears off.

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 them 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 these people and 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 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 God 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 is a very heavy religious and spiritual message presence and this may not be everyone’s cup of tea.

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.  However, definition is important here.  Cliques of core users can appear overpowering particularly when someone disagrees with one of the ‘clique’.  If you want a very wide-ranging set of opinions on some basic NET information – join a forum!  Be prepared to see disagreements and many ‘one to ones’ or ‘one to manys’.  Fortunately, it’s uncommon and a well-administered site will deal with it quickly.  I recently left one UK online web 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). Amazingly some of the ‘reigning clique’ followed me to another forum and continued their personal attacks (again posts were removed when I complained).  Administrators need to stamp on this sort of behaviour when it happens and not 36 hours after the event. My advice is not to join an unmoderated forum and if you sense these issues are not resolved quickly, you should consider leaving that forum to prevent unnecessary stress downstream. In another but different example of bullying, I was blocked from one 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 certain 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 animals. I don’t do zebras, I’d rather talk about people.  I therefore find myself objecting to being described as a ‘Zebra’ and part of a ‘herd’.  Furthermore the community sometimes appears so infatuated by this aged, out of date, and miselading analogy, that it denies the correct level of support to those who are asking for help.  For example, side by side, a post (say) about how to improve quality of life or someone asking for help is likely to get less views/likes/comments than a picture of a Zebra …… that can’t be right.  I tend to ignore these posts on any social media. If anyone wants to fixate on zebras, that’s fine ….. just don’t expect me to join in!

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 “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. It’s really holding back NET Cancer external awareness.

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 and often misquoted equine analogy. I say Let’s stop dehumanising NET patients.

And, by the way, NET Cancer is not as rare as you 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 taking over my life!  I found a lot of the content was making me depressed, mostly due to all the issues outlined above. So, I’ve left most groups, remaining in those which fit my requirements. I occasionally visit to take a look for anything of interest.  You can search really easy in a Facebook forum to read about a particular subject.

So …………….

Are forums ‘frighteningly good’?  There can be a lot of positive outputs from forums and to be truthful, I have learned a lot and made some online friends too.  One of the most amazing things I found was the presence of NET Cancer specialists on certain sites.  I found it astonishing they even had the time – but they are there, contributing to posts, trying their hardest to answer questions aimed directly at them – 24/7.  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.  I like to help people but for the first couple of months after joining, 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 find this very frustrating 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.  I also noticed that some countries are more prevalent users of forums to ask fairly significant and critical questions of other patients.  Sometimes I think this is perhaps an indication of the health system in place and/or a lack of access to proper NET advice from professionals.  I think there can be a lot of ‘firing from the hip’ on forums and sometimes it motivates me to write a blog on a particular subject having done a week or so research and with careful thought.

My own Blog site is not a forum.  It’s worth pointing out (particularly to those who run the forum sites), that my blog with its associated Facebook page is NOT a forum. Nor is it a fundraising or selling site for those who are twitchy about this.  My blog is not aligned to any particular foundation or fundraising organisation.  I just want to send out some positive messages associated with a particular blog subject which will invariably be about Neuroendocrine Cancer awareness and support.  I also function as a signpost for those who may be a bit ‘lost’ and I find these frequently in some of the more obscure and non-NET groups; and in increasing frequency, they are finding me through my digital footprints on numerous social media systems. I’m always happy to talk to people in general terms but I prefer to direct people to the most appropriate and reputable NET supporting organisations and forum sites, particularly in their own country.

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

Ronny

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24 Comments

  1. ConfessionsOfaCancerNurse says:

    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!

    Liked by 1 person

  2. ConfessionsOfaCancerNurse says:

    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!

    Liked by 1 person

    • ronnyallan says:

      Thanks, let me know how your Mum gets on? I’m still learning WordPress 18 months on ……. 😀

      Liked by 1 person

      • ConfessionsOfaCancerNurse says:

        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.

        Liked by 1 person

      • ronnyallan says:

        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!

        Like

  3. ConfessionsOfaCancerNurse says:

    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.

    Liked by 1 person

    • ronnyallan says:

      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.

      Like

  4. […] NET Cancer Forums: frighteningly good or good at frightening? June 11, 2015 […]

    Like

  5. Jean says:

    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.

    Liked by 1 person

  6. Christine Craig says:

    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

    Liked by 1 person

  7. Fiona says:

    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

    Liked by 1 person

  8. Jillian says:

    I agree 100% and am counting myself very lucky that I missed the feces photo. Yikes.

    Liked by 1 person

  9. Sharon says:

    Spot on Ronny! I agree with you 100%. I feel the same way.

    Liked by 1 person

  10. Beth says:

    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.

    Liked by 1 person

  11. cy says:

    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

    Like

  12. 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.

    Liked by 1 person

  13. Jean Borden says:

    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!

    Liked by 1 person

    • Sarah says:

      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.

      Thanks!
      Sarah

      Liked by 1 person

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