1 (edited by randigb Sun, 10 Mar 2013 11:57:54)

Topic: Posting Sensitive Subjects and Statistics

A little while ago on another thread, Lainy brought up the topic of whether posting mortality statistics and other more 'negative' stuff openly on this board was demoralizing to people trying to stay positive.  I can't find that thread anymore, but I am also curious as to what others think about that. (I hope that I captured the spirit of your post Lainy).

The suggestion she had was putting this information in a place where people could actively choose to read it, instead of intermixing it with other information or posting it on board topics where people usually go and might inadvertently read.

So, in the spirit of open discussion, I bring it up here for input from others (since I can't find Lainy's original question).

Discuss...
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

2 (edited by Lainy Sun, 10 Mar 2013 12:29:51)

Re: Posting Sensitive Subjects and Statistics

WOW! Randi, we are so in spirit together. I was telling Robin (daughter) about it and how about 15 minutes later it was gone. BUT found it in my post files! I will repost it and thank you so very much. You are right, while we are an open forum we don't want people turning away, so I felt perhaps statistical stuff especially having to do with survival could be filed instead of open. Yes, I would like to know what others think about how we do things especially as we seem to be growing up so fast.

REPOSTING per Randi's Request the portion of the post questioned:

Some statistics that were posted about CC and time frames. I opened this post then Sandies from France who is trying to adjust to her CC and I had to start wondering....we are a free open forum BUT we try so hard to give hope and miracles so is a post like that too disturbing to you all. What I am trying to say is should it be a "closed" post that one can open if one wants to or should it be an open post that you all want to see. I hope you all understand what I am trying to say, my mind is not clear yet, still on mega Prednisone.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by randigb Sun, 10 Mar 2013 12:39:16)

Re: Posting Sensitive Subjects and Statistics

Thanx Lainy!  I am really curious as to the response from folks.  I know when I was first diagnosed I wanted all the statistics I could get.  When I found them I would get upset and my husband would gently remind me that I am "ME" and my situation is not like anyone elses.  However, I still sought the stats (maybe its the masochist in me).

In any case, I was a little disturbed by recent posts about mortality since I really wasn't seeking the information and then boom, there it was. Hit me like a ton of bricks again.  Not sure why I had that reaction, since really nothing has changed since my last search for stats, but I guess I was starting to treat me as just ME and not the stats and this pulled me in again.

So my vote would be to put this information in another area where it can be found by those seeking it, but not discovered on the board by those who may not be ready to see it.

Make sense?

Just my two cents...
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Posting Sensitive Subjects and Statistics

Randi, you always make sense! You are Randisense of which I can always use a good dose of!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

5 (edited by PCL1029 Sun, 10 Mar 2013 14:10:31)

Re: Posting Sensitive Subjects and Statistics

Hi,
I  am confused , I think I understand  both of your good intentions, therefore should I just provide my point of view to patient  just through my emails to individual patient ONLY and report  only those good news  here and ignore the reality of medical science. I know most people come to this board for emotional support far more than for other reason, but I think it  holds true too that others would like to learn about this horrible disease for medical guidance.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Posting Sensitive Subjects and Statistics

No, No, Percy. Your information we take as valuable MEDICAL information and that should be posted  "out loud".  We are talking about statisitics that someone may read as "OMG, I only have such a short time to live". Help me Randi.  Can't wait to get off these Preds! Like, the other day Sandie from France gave an honest post on how she tries to be so up but is actually so scared. Then she reads a post on mortality rates and my guess is she didn't feel much better. I feel we have given so many HOPE here and without that HOPE what  have they got since we know our statistics for the most part will never be correct. My point was do our members want to go to a category for the statistical stuff if they choose or do they want to continue to read openly about those kind of things. Please, keep up your valuable and unselfish and caring work as you have. You are so valuable and precious to us and have helped so many with your great advise. If anyone looked through most of these posts from members everyone has helped each other in the hope department, I just hate to see that hope taken away. This was my own opinion and I was curious to see what members had to say about it.  You my dear SIR keep shouting as loud as you can!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Posting Sensitive Subjects and Statistics

I understand the points that you are both making Lainy and Randi and I agree with much of what you both say. However, there is a problem in that stats appear in so very many of the articles and research pieces about things like procedures, trials, drugs and just about everything else as well. Pretty much all of the links that I post in the new developments section contain stats of some sort and I don't post them because of the stats etc, I post them because the medical info in the link may be of use to someone.

If I was to post something purely on survival stats or anything like that then I would put a warning in saying that the link contained these stats and only read the link if someone wanted to read that info. Not sure of the way around this really as I already post my links etc in sections that are for them and not in the newcomers/general dicsusion boards.

And Percy, you keep posting away!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Posting Sensitive Subjects and Statistics

Gavin, this is exactly the stats I meant. Thanks,

If I was to post something purely on survival stats or anything like that then I would put a warning in saying that the link contained these stats and only read the link if someone wanted to read that info.

One day I will learn short cuts instead of taking the long road around! And as you can all see, us Moderators are totally unrehearsed. What you read is what you get!  LOL

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Posting Sensitive Subjects and Statistics

I changed the name of my topic where I post most of my statistical information from "Cholangiocarcinoma.org Statistics" to "Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)"  This is in the Geneal Discussion area and is where I post most of the statistics from my cc database.  Some of my statistics appear in my other posts but I include them to answer questions or to expand on topics I've introduced that did not originally include statistical evidence.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: Posting Sensitive Subjects and Statistics

I needed the stats and came here and many other places to look for that.  I armed myself with it from the beginning. To put the information in a specific place would however help to avoid it for those that don't want to see it unless actively seeking it out. 

Even without a specific post on stats though, the posts can make for hard reading at times. I feel that posts in general, whilst definitely being a positive forum and a force for good, reflect the course this disease all too often takes.  Before I got my head around the stats, from posts alone I knew the severity of the situation that lay ahead.  I'm sorry if I'm now being negative, it's certainly not my intention and what I'm trying to inarticulately say through the Internet ethers is perhaps coming out all wrong.  I'm just not sure how easy it is to avoid in a post as a post about oneself or family member could also make reference to existing stats whilst not specifically being about that.

Clare

In the stars now . . . .

Re: Posting Sensitive Subjects and Statistics

I think most patients learn the statistics very early in the process.  When my husband was first diagnosed, we received an information pamphlet from the American Cancer Society that was less than encouraging.  I came to this website for information and I have found a wealth of it from Marion, Percy, Gavin and others who post links to studies and websites about cholangiocarcinoma.  Like Clarem, I find some of the personal stories, particularly about patients in the final stages of the disease, the most difficult to read.  For a long time I limited myself to the more scientific sections of the board as well as the "good news/what's working" section but I then found that I could learn a lot from the other sections of the board too.  Although some of the posts make me sad, many of them are full of hope and provide information we would never learn elsewhere.  Personally, I like the open discussion on this board and would not be in favor of changing it.

12 (edited by randigb Sun, 10 Mar 2013 16:22:44)

Re: Posting Sensitive Subjects and Statistics

Sorry Lainy, I was offline for a while hence I did not chime in. 

So I think what Lainy (feel free to correct me if I am wrong) and I were referring to is when someone is on the board asking a question about something and there is a response that gives the hard stats in there.  That may be what that person wants, but it may not be what others want to read.  So perhaps having a place to refer them (ie. our lists of hospitals) would serve that person better and give others the ability to not go there.

Links and such are great. The reader has the choice of following the link to an article (which may have information in it that's hard to hear) or not.  I often go to them when I want that kind of information myself...I don't often understand all that is being said but I guess that's  my problem smile

Percy/Bruce: I think what you post (and everyone else) is invaluable and the effort and attention and caring you put into everything you post it is obvious to us all.  Please do NOT stop or take this as if anyone (least of all me) is asking you to stop. 

I just understood what Lainy was saying because I experienced it the other day.

Man can I whip up a storm...it's a bad trait that I will have to work on.

-Randi-

Oh and these are just my opinions for sure.  Others i am sure will have other opinions.  Just thought I'd give mine.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Posting Sensitive Subjects and Statistics

I think it's an interesting topic, Randi and Lainy.  It's hard for a board to address everyone's needs and whatever you decide is fine with me.  I've never found an internet board that is friendier and more supportive than this one.

Re: Posting Sensitive Subjects and Statistics

Bruce..thanks and that is just great.
This has been a good feed back and I do have a little suggestion for all. For a while when we were posting about Hospice or getting further down the road we just labeled the post SENSITIVE> Perhaps it would help to do that again, me included.  Then people can decide if they want to read it or not. When someone wants to know more about Hospice or "the end" I usually e mail them personally and do receive some emails asking me about it as well. Sadly it seems to have become a forte of mine.
Like Randi said, I in no way want Percy or Bruce to stop anything was just concerned about others feelings. Nor more no less.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Posting Sensitive Subjects and Statistics

Yea as far as I am concerned a simple <Sensitive> above the post would suffice. 

In my opinion, as to article links, people are free to go or not, so as long as there is a description like there always is, it's up to individuals to go or not to read the article.  I don't think it's fair to ask the poster to read the entire article for sensitive information...that is up to each person once they know the title of the article, right?

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Posting Sensitive Subjects and Statistics

Wow, what a big discussion!! I think the <sensitive> is the way to go. Although, if people are like me, I always read those. I find many posts upsetting, but I feel I learn so much from everyone. Sometimes I just have a good cry and pick myself back up. This cancer is rotten and there is no way to sugarcoat it. I'm sure I would feel differently if I had CC. This is the reason I participate on this site and Lauren does not.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Posting Sensitive Subjects and Statistics

I, too, find many posts upsetting, but I also know the mortality rate, while still horrendous, is better than 2 years ago when I found this site. When I was diagnosed, it hit me like a ton of bricks that I might not live to see my 50th birthday. By the way, I turn 50 in June and I have no intentions of going anywhere for a few more years at least. I am coming up on my 2 year anniversary of hearing the word cholangiocarcinoma for the first time, and my initial searches all pretty much said I was done. I'm still here and still "not sick!"
While it s extremely upsetting to read some of these posts, I find it encouraging to know the mortality rate has dropped so much in 2 years, and I hope and pray that within the next couple of years yet more breakthroughs are found and the mortality rate percentages change to survivor percentages!
I will agree that adding to the title saying a post has sensitive material may have merit. But then I think that I often click on a post that says "my mom" or something as "mundane" and end up crying like a baby over someone's post.
It's a hard decision to make, and I often skip posts when the title sounds like I would get far too upset. Then again, I read most of the medical links pertaining to me, no matter what, for any new information I might glean from the new research.
Sorry if this is disjointed. I'm trying to be cohesive, but don't seem to know if I am making sense.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Posting Sensitive Subjects and Statistics

Although, I much understand the impact of disturbing news on this board may have on some individuals, I strongly believe that the concept of this discussion board has stayed true to its form and that it has been successful for that very same reason - it offers an uncensored venue for expression of thoughts and ideas.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Posting Sensitive Subjects and Statistics

This board has been so valuable in our, my familys, fight against CC.  My own opinion is prepare for the worst but fight for the best.  The only true information I was able to obtain came from right here!  I could not put my head in the sand and ignore the facts.  This board helped me help my son live the best life possible and helped me to know we were not alone in this fight and everyone's CC does not take the same road.  Just as reading the good news one needs to read the sad news and process the information.  The open honesty and compassion here armed me to help my son, my family and myself.  This board is where I came to look up every question about stats, symptoms, what to expect and how to help.  The medical community does not know and has nothing like this board available.  I wouldn't change a thing!  And the small doses of sad news, interspersed with the good news, gently leads all to what might happen.  Just my opinion and of course my never ending gratitude to all of you!

Re: Posting Sensitive Subjects and Statistics

I have always admired this site for many reasons, but for me I particularly appreciate the support and honesty it provides.   Now recovering from CC, I can say that I cherished the honesty, I knew where I stood and it allowed me to ask questions from a position of strength through knowledge and the experience of others.   Surgeons, oncologists and nursing staff are honest with patients and their families and I feel anyone reading the posts on this site can accept such honesty and believe that those readers are the very people who want such honesty.  They know that there is no magic cure hidden amongst these posts, they come to know that there is love, support and honesty.   I suspect that highlighting the fact that information may be of a sensitive nature may draw people to read such information.   How many times have we read posts that include a phrase along the lines of "I am so glad I found this site" yet have we ever read a post that says the opposite?   This site is an amazing source of information ... some information we want to read and some we don't ... but both become valuable in our quest for understanding.  i would advocate it continues to be that way
Sandie
X

.... because I can ....

Re: Posting Sensitive Subjects and Statistics

Thanks Sandie.  Many read more in to this than what Randi and I had intended. The bottom line was perhaps we should mark some posts SENSITIVE. We did do that for awhile and somehow it got lost. By marking some things Sensitive the post is still posted but people can then decide if they want to read it or not. We never meant or actually implied that anyone should ever be censored as this IS an OPEN and Free Board. Don't know how this got so misinterpeted. Nothing is going to change except that I am choosing to post Sensitive if I feel it is a subject some may not want to read. Take care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Posting Sensitive Subjects and Statistics

I value the support and all the information and statistics. If you take out the statistics then you would not be able to post so many of the great articles (which include stats). I would rather read stats here with the caring and supportive members than somewhere else on the web.
Just my opinion
Hugs,
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Posting Sensitive Subjects and Statistics

Nah you didn't whip up a storm Randi, just brought up an important topic for discussion. It was good to read everyone's views and opinions on it. So nope, you don't need to work on that trait Randi! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Posting Sensitive Subjects and Statistics

Jumping in with both feet on this subject...I come to this site because it gives me real world answers to questions about CC. I love the support and how info can be followed to actual studies and information. Yes the statistics are staggering and a slap in the face but that is what they are. I don't think hiding them on special pages or calling out hey...bad news here, is the way to handle them.
I love the way this website is set up from the threads of personal challenges to the dry read of a study. Every person needs to decide on their own how much "honesty" they need at any given time.  It's very easy to hit the back button if it gets too much for you.
Currently Im looking at studies at what people have done after a 16 course gem/ cis. So talk about statistically dry and depressing looking at studies with some outcomes I'd just rather ignore. But I'm learning...I want to know what has the best chance in the bad lottery of having CC because each little improvement of 6 months longer gets me that much closer to them finding a cure.
So big kudos to all that take the time to post results and hunt down studies and keep us on top of the FIGHT!

Cathy

Re: Posting Sensitive Subjects and Statistics

Randi....I agree.  This is a great topic to present.  It solicited the input of our members and allows for a great overview of people's opinion.  After all, that is what we are - a great people board.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER