IMPORTANT
What is mean by the term “Neuroendocrine Neoplasm”.
A Neuroendocrine Neoplasm (NEN) is a term covering all types from a low-grade low stage well-differentiated Neuroendocrine Tumours (NET) all the way up to high-grade high stage poorly differentiated Neuroendocrine Carcinoma (NEC). Additionally, there are people from all across the world and who are in widely different types of healthcare systems (public and private/insurance-based). So please remember the audience when posting as this regularly causes confusion.
1. Make it clear when asking questions where this is applicable. i.e. use NET when you mean NET and NEC when you mean NEC. If you mean both, use NEN.
2. If the person’s question is not clear, be careful answering as you could mislead the questioner and others reading.
About
In addition to my numerous public sites, I also have a private Facebook group. This is a chat site for discussions about Living with Neuroendocrine Cancer and the emphasis on learning about the disease. It’s for international patients and their primary caregivers/carers/supporters, for any type of Neuroendocrine Neoplasm (NEN) – a term combining Neuroendocrine Tumour (NET) and Neuroendocrine Carcinoma (NEC). The owner may also invite carefully selected medical professionals to join. Regardless of who posts or comments, nothing in this group should be considered medical advice. It’s a group for Neuroendocrine Cancer and we cannot discuss other illnesses unless there is a direct correlation or is a side effect/symptom caused by Neuroendocrine Cancer.
Disclaimer
Check out the disclaimer which is applicable to all – click here.
The group can be found by clicking here or on the green box below.
What we do
This is a support and education group. It’s not designed to run like the Facebook patient forums and groups you may find elsewhere. This is a group where people are not bombarded with too much unsubstantiated, suspect and out of context information. We focus on factual stuff and important things that really matter to patients and their supporters.
What we don’t do
We don’t do the out-of-date zebra/unicorn/peacock thing, we are adult human beings in this group.
Nor do we do the ubiquitous stuff that fills up our personal Facebook accounts, such as quotes/poems/jokes/memes/GIFs yada yada. The group is not for that.
This group also discourages the spreading of cancer and Neuroendocrine Cancer myths including those alternative therapy protocols which patrol the internet – we have many keyword automatic removal features using fixed keyword checks built in and/or admin staff removal following a review of the alert.
The group owner works really hard in this group and external to this group and will not allow infiltration by others whose purpose in joining is to poach members to their own groups/blogs/pages etc. Ditto on fraudsters such as snake oil and shirt sellers (as examples of two common issues all groups face).
So here is where we stand …….
- If you have come to this group to call people by the name of an animal and you want to see masses of Facebook ‘tat’ and cancer myths, then you’re in the wrong place and should leave or not apply.
- If you have come to this group to spread cancer myths, promote alternative treatments and to spread false hope (via posts or directly messaging other members), you’re in the wrong place and should leave or not apply.
- If you’ve come to this group for the single purpose of promoting yourself, poach members for your own group or organisation (unless your group is working in partnership with Ronny Allan), promote your organisation or some other organisation on their behalf, your book, your video, T shirt, website, etc, you will not last as we will spot those behaviours. If that fits, you’re in the wrong place and should leave or not apply.We have strict joining checks. We also block and ban when necessary, at the application process and if any of the above activities are eventually exposed.
The Detailed Rules
Before you applied to join, you will have had the opportunity to read the abstract rules which are displayed externally to all those finding the group online. Due to Facebook limitations, we only list the most prevalent 10 externally and some of the text is limited by character count. Therefore it is impossible to provide detailed coverage of our rules on the externally published rules you see when joining – thus this guidance and the full group rules published below.
Where a keyword alert automated process removes a post or comment, it will provide some info as to why e.g. “post/comment includes certain keywords “example keyword”. This group cannot control how Facebook does this or how it is displayed on your device and operating system but we know it works because we see what the same output in our audit trail. The admin staff will provide short text messages (limited by Facebook instigated character count) as to the reason backed up by ticking on of the 10 externally published rules of the group, again a Facebook limitation and we cannot control how this works on your network, device and operating system. There are too many keywords listed in our group configuration but see more about keywords below under the Posting and Commenting section.
Due to these Facebook limitations, every new joiner will be tagged into a welcome post within 7 days of joining. You will then have another opportunity to read the full group rules which will be linked to this welcome post via this guidance – click here to see and read these again. The owner will also re-publish the group rules once a month. Please note these rules are tweaked now and then. Major updates will be reposted in the group, in-between monthly reminders if necessary.
We are receiving unwanted posts due to Facebook instigated ‘new member introduction prompts’. Our rules do not allow you to post these. The prompt tends to be something like “I’d like to introduce myself and share a picture I took”. There are other variations on that theme, all controlled by Facebook. My research indicates that people running large groups are up in arms against Facebook for rolling this feature out without the ability for admins to turn it off. There is no need to add a post that has no other meaning than “thanks for letting me join” or “Here’s a picture I took” as soon as you are admitted – this type of post can clog up the feed. If you get a ‘new member introduction prompt from Facebook, please skip past it.
Remember, being a member of this group is a privilege not a right.
The group admin staff have a difficult job and they do it voluntarily. So if you start abusing the owner or any member of the group admin staff either publicly or privately because you disagree with decisions on whether to remove a post or comment, you may end up being removed from the group and banned from further entry.
Please take the time to read these rules, it will help ensure your posts will be approved and ensure your contribution to the group remains within these rules. Clearly most rules are subjective and not 100% objective but administration staff always consult each other in borderline cases and decisions will be made on whether a post or comment is within the spirit of what this group is about.
Failure to read these rules and guidance is not an excuse to break them.
Inviting Others
The group is open to your primary support person e.g. carer/ caregiver/ personal advocate or whichever term you use. It’s our experience that using the Facebook invite system does not work. We find that 99% of invites remain unanswered and this causes significant effort for group admin staff. If you persist in using the Facebook invite system, we will leave the invite in our join queue for 24 hours and then reject if the joining questions remain unanswered. Please, therefore, ask your primary support person to join as an individual and answer the joining questions accordingly. Also ….. the group is intended for patients and their primary caregiver (there are exceptions to a second person at the discretion of the admin staff) but please do not invite entire friends lists or family. Plus, those you invite may not actually wish to join. Message them with the details of the group and let them decide themselves please.
Posting and Commenting
The group works on a post-approval system, which means an admin/moderator will assess your post to ensure it is within the agreed rules and in the spirit of the group’s aim. Please note if you amend a post, it goes back into the approvals system, and until re-approved, it will not be displayed in the group. Those found using the post amend feature to bump their posts up the feed will have their post removed. We held a poll to make sure people were happy with the post-approval system and it received a huge thumbs up to continue with this filter. We normally try to approve posts within a short time frame but occasionally due to holidays etc, this can take longer. However, sometimes we delay post-approval to ensure the maximum amount of people can respond, this could be based on the content, the time of posting and/or location of the poster. Please be patient, there is no need to re-post if you don’t see it immediately as there could be several people in the queue/line to post. In order to ensure your post is approved quickly, please word it in accordance with the rules and spirit of the group’s purpose.
Heterogeneity. In the simplest of terms, this means Neuroendocrine Cancer comprises of disparate parts, i.e. we are all different. It’s often better to focus on which part you are talking about. This heterogeneity extends to many things, insurance systems/public healthcare systems, low/high grade, low/high stage, guidelines, functional/non-functional, treatments available/unavailable, side effects/no side effects (some people get them or get some, some people don’t get any, comorbidities or no comorbidities.
Therefore …….. in addition to above, please note the following before you post:
1. If your question is country-specific, please let the members know which country you are referring to, otherwise, you may get misleading answers.
2. Similarly, if your question is regarding a specific issue with your particular diagnosis, please add (as applicable) your grade, stage, and primary tumour to get the right focus – again, if you omit this, you may get misleading answers to your focused question.
3. If you have a grade 3 (high grade) type of Neuroendocrine Cancer, you must be careful to add your differentiation (well or poorly) to any question. If not, you may get some totally wrong and misleading answers. If you are a well-differentiated Grade 3 NET, adding your Ki67 also helps with answers due to the threshold for treatment options. If you have a poorly differentiated tumour i.e. Neuroendocrine Carcinoma, we strongly recommend joining a Neuroendocrine Carcinoma group as your main point of reference. Please message Ronny for recommendations.
4. Remember when you post about side effects (alleged or confirmed) that many people do not get the same or any of the same side effects. Inferring that everyone gets side effects is not accurate.
5. Some posts and some comments will be automatically rejected if they break predefined rules we have setup based on keyword alerts. Comments do not need approval, but these are moderated by the group admin staff including via more keyword alerts, member reported prompts and automatic keyword rejects as we learn what people attempt to post.
Please note the most common (but not all) reasons for post rejection and comment deletions are as follows:
- Themed backgrounds. i.e. a post with a Facebook provided specific colour or theme as a background.
- Posts made solely for the purpose of introduction without a question to the group and/or contains a picture (or pictures) not relevant to the discussion.
- Pictures of animals associated with vastly outdated awareness practices. (e.g. zebras/unicorns/peacocks). This rule extends to internet links which then display an offending picture or word or the offending picture or word are contained within a video either by visual or audio.
- Cancer myths (including those in Neuroendocrine circles). Alternative therapy is not what this group is about – please refrain from anything which lacks science in working on Neuroendocrine Cancers of all types.
- Links to technical information without any context added by the poster, i.e. why is it being posted and why is it relevant to the group discussion.
- Quotes, Memes, GIFs.
- Overtly religious posts which appear to only be for the purpose of conveying a religious belief rather than asking a support question about Neuroendocrine Cancer. We are essentially a secular group focused on Neuroendocrine Cancer matters.
Personal Messaging other members and friend requests. We cannot control this, but we believe it must be a two-way consensual activity. Our experience indicates members do not appreciate other members messaging them or sending friend requests out of the blue, some describing it as ‘creepy’. Additionally, in certain scenarios, this may be seen as potential poaching by the admin staff. If you have a good answer to a question, please let us all see it, as long as it is within the rules. Poaching for the purposes of building up your own site will result in your removal and banning from this group.
Post Topics. The group once operated a topic label system where every post is labelled with the key topics of the post discussion. The topics can be handy when searching for similarly themed posts. Unfortunately, this was discontinued by Facebook in 2022 but some legacy posts may still have them attached. Perhaps Facebook will bring it back one day.
Searching inside the Group. There’s also a search button which can often provide more detail than the topic search. Again, you will be able to find it based on hardware and software platforms you are using, for example, on an Android smart phone, it’s at the top of the screen identified by a magnifying glass icon. Input your search terms and will show all posts with that term in the actual post or in the comments section.
Files. The group has a ‘files’ section but please leave these for the site owner to add and update. Please message Ronny attaching the file. Files not arriving via Ronny will be removed for analysis and ‘fit’.
Obituary Announcements. We once allowed these in the timeline, but we have now created a special place in the group files for posting this sad news. They will now be added here (only viewable to members). Message Ronny to add if you know someone in the group who as unfortunately passed.
The Unavailable List. Only viewable by group admin personnel. This is a list where members are either undergoing a Facebook ban, their accounts are closed, or they have blocked an administrator/moderator. We regularly clean out these lists (remove from group). If you have blocked an admin or a moderator, you will eventually be removed from the group without notice during one of our cleanouts. If you want to stay in the group, do not block a group admin or moderator.
Please take the time to read these rules, it will help ensure your posts will be approved and ensure your contribution to the group remains within these rules and in the spirit of what this group is about. We have automatic rejection criteria which we programmed into Facebook settings; you will receive a notification when this happens. Often you may feel that your post was not allowed, or your comment was unfairly removed. Admin staff will always consult each other on borderline cases to find a consensus opinion. Sometimes it is felt the rule breach is marginal, but the post/comment is not in the spirit of what this group does and is rejected. Constructive complaints to the group owner if you feel aggrieved.
Failure to read these rules is not an excuse to break them.
Finally. The owner and other admin staff work hard to keep you safe and there are many excellent discussion threads available. Many people prefer to only read content and that’s perfectly fine, it suits the learning aspect of the group. Please note the admin staff are volunteers and give up their own free time to help out. They do this because they care about supporting other patients, but they have a job to do in keeping the group orderly within the rules and within the spirit in which the group was created and functions. They are not there to be abused by those who have different ideas. Remember, being in a group is a privilege, not a right. Abuse of the administration staff will not be tolerated and may result in your removal from the group.
Please enjoy the group.
