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#157095 - 11/04/12 02:31 AM Posting Etiquette  
Joined: Mar 2002
Posts: 4,736
Brian Hill Offline
OCF Founder
Brian Hill  Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,736
Boise, ID and Portland, OR
Message boards like this one have lots of posters on them, all with different issues, treatments, complications, concerns, etc. Board admins like everyone to start their own thread and not inject their personal issues into another person's thread of ideas. (That's referred to as hijacking a thread).

The reason for this is that people on the board like to "follow" you, get to understand your particular situation and read what others have offered up to you before they add to your thread. Also, a good signature block lets everyone know your situation (this signature evolves and changes as you progress) and keeping your story separate from others keeps it all less confusing to people who wish to help or comment. So it's a simple protocol and you are hardly the first posters to hijack a thread - it is a regular occurrence.

After your thread progresses (if we hope not, you actually become a patient) you start new threads in the treatment forum, or emotional issues forum or whatever depending on where you are in the process. Thanks for understanding. It will make it easier for everyone who wishes to stay abreast of your situation and give you some assistance along the way. test


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#157101 - 11/04/12 12:56 PM Re: Posting Etiquette [Re: Brian Hill]  
Joined: Jun 2007
Posts: 9,625
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,625
PA
When you are new and not sure how to navigate the forum, here are a few pointers. Its not always easy when you are new to understand where your post belongs. This will hopefully simplify it.

Being new, its always best to start out by making an introductory post and putting it under the "Introduce Yourself" tab. This will allow everyone to welcome you and get you know you. Its a great ice breaker and basically its what new members do around here. Members here get to know each other pretty well even though our site is completely anonymous. Only include personal info that you dont mind sharing with everyone. Please begin with introducing yourself instead of jumping in and giving out advice. It only takes a couple minutes to say hello and a little about why you joined OCF.

To begin a new thread (which you always want to do if your topic is asking questions, venting about your situation or anything mainly about yourself or your patient) its easy. Scan the topics down the left side and decide which works best for your post. The "General" tab should be used very infrequently and 95% of most new posts will fit into one of the other categories. Click on the name of the tab you want to post under. On the next page on the upper left, click on "New Topic" and type in the white box, when done click "submit". Dont worry if you have sent your post and want to make a change, you can make an edit for up to 3 hours after you posted your post. We do have great search function and chances are your question has already been asked and answered many times. Try doing a quick search of what you want to ask about and see what comes up.

SIGNATURES....Another very helpful thing is a signature. This is one of the first things you should do when you join and make your first post. By making a signature it helps us to get to know you faster. There are thousands of members and to help someone we need to know what they have been thru, diagnosed with, their treatments, etc. It doesnt have to be anything fancy just a mini timeline of your history. With so many members its not always easy getting to know new people especially when there are a few new members at a time. Most members dont want to have to spend time going back and rereading all of someones posts to figure out whats going on and what advice they can give to help. To make a signature, click on the "My Stuff" tab on the top. On the drop down menu, click on "Edit Profile". Scroll to the bottom and type in the white box and click "submit". Remember its against the rules to have a link in your signature. A signature will help us to help you, without it you will get far less replies.

How to post... If your post is in response to a question someone asked then it belongs there on that persons thread. If your post is giving info, support or advice to the person who began the thread then yes, post on their thread. If your post is comparing your symptoms or condition to the original poster's symptoms or condition and you are mainly writing about yourself then you probably should begin your own thread. If you have questions about your condition, start your own thread. When making a post if its mainly about you then it should be on its own thread. By writing about yourself on someone's established thread it takes away from the original posters questions and will hurt you both by both of you receiving less replies. It makes it difficult for members to follow along 2 or 3 different people on the same thread. By posting your own things on another members threads this causes the admin alot of work to clean up what was done especially when there are responses for a few different members. This can create quite a mess and take alot of time that could be better spent helping other members.

Still unsure?... ask. I dont mind helping anyone with any forum questions, send me a private message (PM) and I will help you. Its very easy to send a PM. Click on my name over on the left and a drop down menu appears, click on send a PM and write your question. I usually check the forum at least 4 times per day so should reply quickly.

Private messages (PM).... This is to contact another member without putting it on the public forum. Its a personal note to another member that others cant see. This can be used if you want to ask a specific member a question or discuss something private without having it visible to the entire OCF community. To send a PM, click on the persons name, near the bottom of the profile click send private message. If the user you wish to contact has a post, click on their name and you should get a drop down menu, then click Send a PM.

Blogs are just that....blogs. They are one persons thoughts and views. Its not necessary to make comments on those threads. The authors of blogs sometimes prefer to have their story remain free of others posts, they are not asking questions just getting their thoughts down.

Hope these pointers will help make things easier for all our members. Thank you for helping us to help you!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#158400 - 12/03/12 01:42 PM Re: Posting Etiquette [Re: Brian Hill]  
Joined: Jun 2007
Posts: 9,625
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,625
PA
Another couple of helpful pointers....


Pay close attention to the dates of the posts. Sometimes in our wish to help others we dont always look at when the thread was written. Things can move pretty quickly around here. A thread that is only a few weeks old could be considered out dated depending on the topic. You could be replying to a member who asked for help interpreting their doctors notes while a few weeks later this member has finished treatments and is recovering so info about doctors notes is moot. While some other threads can continue on for years. By posting a reply on an old thread it will push the newer threads (sometimes more urgently needed pleas for help) down lower where they wont get seen or as many responses which can negatively impact that other member who is very sick and needs help quickly.

Where to put your post? This can be a little tricky when first joining the forum. By taking a minute and reading the descriptions of all the tabs on the left, it will make it easier to know where your new post belongs. Selecting the proper topic to place your post under also make the admin's job much easier by saving them time. This time could be much better spent helping sick members instead of moving posts around. All the admin volunteer their own time (several hours per day, every single day) to helping others and keeping the forum on track. When in doubt, just ask and we will be happy to help you. Only post your question once, duplicate posts are not necessary and will be deleted.

Be civil and respect others like you would expect them to respect you. Everyone is different and has their own problems which we can all relate to. Avoid the topics of religion and politics, everyone has their own individual ideas and this is not the place to discuss them. This includes any mention of God or any other spiritual being. When posting, remember the two subjects that should always be avoided.... religion and politics.

When reading posts, it can seem like some members are overly blunt while others are kinder and more caring. This is what happens when reading what others write, it can be interpreted in all kinds of ways. Since it is not a face to face or even over the phone conversation where you can hear tone and manner it sometimes is hard to distinguish a persons intent. Use care when writing posts as it is going to be read by people from all walks of life, with all different social and economic backgrounds. Before you hit the submit button, take a few seconds and read over your post again to ensure it is not offensive to anyone. Many members are under extreme stress of either fighting for their life or caring for a very sick loved one so tensions can run high and things can easily be misunderstood. Give others the benefit of the doubt as people here really are committed to helping others go thru their battle the easiest way possible. Please show others the kindness you would like to have shown to you, your words can have a big impact on someone elses day.

Remember this site has members and readers from all over the world, all ages and with different backgrounds. Please refrain from using foul language or innuendos in your posts. When posting think of it like this, would your mother, grandmother, or children be shocked or offended if they saw what you wrote. If your answer would be yes then edit your post to reflect a kinder, gentler tone.

Please do not mention physicians by name. OCF is not a doctor referral site and cant permit disparaging remarks to be posted. Same goes for treatment facilities. We cant have reviews on our forum. There are website that can refer patients to doctors where they have stringent guidelines and protocol they go by to rate physicians and hospitals. All any of us can do to help is point others in the general direction and suggest they get the best medical care they can.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#160405 - 01/17/13 02:27 PM Re: Posting Etiquette [Re: Brian Hill]  
Joined: Jun 2007
Posts: 9,625
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,625
PA
Originally posted by Brian in 2009

Abbreviations and Definitions for Common Terms

BaCC = Basil Cell Carcinoma Biopsy Tissue sample removed for microscopic examination

BOT = Base of tongue Brachytherapy = Radiation therapy with internal radioactive seeds

CAT/CT = Computed Axial Tomography (scan); CT Computed (Computer tomography (scan)

CCC - Comprehensive cancer center or clinic; A tumor board at a cancer center will include doctors trained in different disciplines. Having your case presented and evaluated by this type of multidisciplinary team will give you the best options for treatment, considering all possibilities from their different areas of expertise. http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Dives = Treatments in a HBO Unit

DO = Dental oncologist DX - Diagnosis EBT - External beam radiation therapy aka XRT ENT - Ear, nose, throat Doctor aka Otolaryngologist

FNA = Fine needle aspiration (Needle Biopsy) Glossectomy - Removal of tongue HBO - Hyper-baric oxygen Patient given oxygen under pressure prior to dental surgery.

HIPAA = Health Insurance Portability and Accountability Act HNC = Head and neck cancer HPV - Human papilloma virus

IMRT = Intensity modulated radiation therapy http://www.oralcancerfoundation.org/facts/imrt_radiation.htm Margins - Refers to the margins of biopsied tissue; clean margins indicate that all the visible cancerous cells were removed. http://www.oralcancerfoundation.org/facts/detailed_biopsy.htm

MET(s) = Metastasis or cancer spread

MO = Medical oncologist

MRI = Magnetic Resonance Imaging (scan)

NCCN - National Comprehensive Cancer Network (an alliance of 20 leading comprehensive cancer centers). http://www.oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

OCF - Oral Cancer Foundation PCP = Primary Care physician PEG - Percutaneous Endoscopic Gastrostomy aka feeding tube http://www.oralcancerfoundation.org/dental/tube_feeding.htm

PET = Positron emission tomography scan

PT = Physical therapist

QOL = Quality of Life

RAD = Radiation

RND = Radical Neck dissection (sometimes resection) also Modified

RO = Radiation Oncologist

RT = Radiation Therapy [(also Radiotherapy (Radio)]

RX = Prescription or treatment

SCC(a) = Squamous cell Carcinoma also SqCCA and sq cell ca

Stage - Development of the cancer http://www.oralcancerfoundation.org/facts/stages_cancer.htm

TNM - System for describing the cancer

TX = Treatment/therapy Xerostomia - Dry mouth resulting from reduced or absent saliva flow

XRT - Conventional external beam radiation therapy aka EBT


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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