Neuroendocrine Neoplasms (NEN) is a term covering all types from low-grade low stage well-differentiated Neuroendocrine Tumours (NETs) all the way up to high-grade high stage poorly differentiated Neuroendocrine Carcinomas (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.
About. I also have a private Facebook group. This is a chat site for discussions about Living with Neuroendocrine Cancer. It’s for international patients and their primary caregivers/carers/supporters, for any type of Neuroendocrine Neoplasm (NEN) – a term combining Neuroendocrine Tumours (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.
The group can be found here.
Disclaimer. Check out the disclaimer which is applicable to all – click here.
What we do. This is a support and education group. It’s not designed to run like a standard Facebook patient forum. This is a group where people can feel safe and not be bombarded with too much-unsubstantiated information and unrelated ‘Facebook tat’ you may see elsewhere. 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 zebra/unicorn/peacock thing, we are people in this group. Nor do we do the ubiquitous and junk mail stuff such as quotes/memes/GIFs. This group also discourages the spreading of cancer myths including those specific to Neuroendocrine Cancer. 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. Similarly, if you’ve come to this group for the single purpose of promoting yourself, your organisation or some other organisation on their behalf, your book, your video, etc, you will not last, you’re in the wrong place and should leave or not apply if you’re thinking about joining.
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. Every joiner will be tagged into a welcome post where the full group rules are linked – click here to see these again. As a consequence, there is no need to add a post that has no other meaning than “thanks for letting me join” as soon as you are admitted – this type of post can clog up the feed.
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. Failure to read these rules 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.
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 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. In order to ensure your post is approved quickly, please word it in accordance with the rules and spirit of the group’s purpose.
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.
Comments do not need approval, but these are moderated by the group admin staff including via keyword alerts and member reported.
Please note the most common 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.
- 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 are contained within a video link.
- Cancer myths (including those in Neuroendocrine circles).
- 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 support for Neuroendocrine Cancer. We are essentially a secular group focused on Neuroendocrine Cancer matters, it’s our experience that references by people to a Christian God or other faiths’ terms, can be offensive to those people with a different faith, or indeed, no religious faith.
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 poaching by the admin staff. If you have a good answer (within the rules) to a question, please let us all see it.
Post Topics. The group operates a topic label system where every post is labelled with the key topics of the post discussion. The topics will be added by admins/moderators shortly after the post is approved. The topics can be handy when searching for similarly themed posts. You should be able to see the list of topics, but this will depend on the machine platform (PC/phone/table) and the software platform (IOS/Windows 10/Android).
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.
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 should now be added as follows – click here (only viewable to members)
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.
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.