Topic: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Attention everyone.  I googled my name;  I found posts from these boards.  These were private between me and all of you as far as I thought.  Which sometimes after chemo not too far.  But in my mind they are private communications from me to you.  Not the entire fricking world.  Just think if I was trying to get a job, they googled my name and found I should already be dead.

Anyway, I am very very upset about this.  Perhaps it is only me but so what.  I am very disappointed that this has happened.  I would have thought this organization would have been more sensitive.  Give them access to all the great info here but not our comments to each other.

Ben Freeny

2 (edited by marions Fri, 07 Mar 2014 00:50:10)

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Ben....did you google your first and last name?  Postings on this site do show up on google (I tried it a few minutes ago) however; full names should not be revealed unless the poster made mention of it. 
I am so very sorry for this happening.  Our team will get on this in the morning and respond to your posting.
Unfortunately I am not able to get to this board for a few days as I am heading to Europe, but I know that this issue will be tended to.   
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

3 (edited by jathy1125 Fri, 07 Mar 2014 08:31:46)

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Ben, I am glad my post are public!! If my information on this journey ends up being read by some one looking for answers and HOPE, I have paid it forward and honored my donors and doctors, who gave me a story!! I am excited to say numerous people have contacted Wayne and I about our hero, Dr. Chapman, because of google showing our posts on CC site and at least 3 people have had there diagnose changed from hopeless to resections and HOPE!!
PLEASE do not change this!!
Lots of prayers for HOPE for our CC family-Cathy

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

I just found mine but honestly I have NEVER posted anything here that I would not want to be seen. I totally agree with Cathy. This CC is one big rare monster and if our site helps just one person I feel that I have done something huge. I think the way Google and etc is set up everyone needs to be cautious but there is nothing on our posts that others should not see. But that is an interesting development. Guess Big Brother is always watching.

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: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

I suggest that if you want to remain anonymous, register using a pseudonym.

Willow

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Great response Willow. Facebook and other social media sites have already shown us that there is very little "private" information on public sites. Your point about creating a pseudonym is right on the mark.

Carl

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

I agree with the other posts in response, but I also think Ben is raising a valid concern.  There are unethical employers out there who would not hire and even fire employees with cancer.  Also, when I googled "cabozantinib" recently, it was a little unnerving to see my posts on this board pop up.  I'm more than happy to share my mom's information for the benefit of the members on this board (and anyone else with this disease), but it was a cautionary reminder that anything I put out there (or here) is up for everyone to see.

Caroline

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

I just think we all have to remember that anything posted on the internet can be accessed. Even when deleted or marked as private, there are those that can get the information. I would never put anything on here that I would not say in public to anyone. I never thought about it from a potential employer stand point but I am not the one with cancer. I would think that if an employer used cancer as a reason not to hire you it would be discrimination if you could prove it. Just my thoughts.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

9 (edited by DukeNukem Sun, 09 Mar 2014 08:40:37)

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Another option.  Login, go to your Profile, then your Identity.  Change your Name and Location.  If this worked, you should only see that I am in Ohio, not the city.

Previous posts are probably not affected, but I will look after this one.

Update:
Nice idea, but Google still finds me.  Will try one more thing. (Didn't work - Google is very persistent.)

I thought CC.org wants your real name when you apply to register.

Willow - your idea of registering anonymously will work if you do that from the beginning - doesn't look like there is a way to change things after the fact.

Fighting with dignity, not desperation.

Live, Laugh, Love

10 (edited by thebompie4 Sun, 09 Mar 2014 18:41:07)

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Just FYI you CANNOT be fired from a job because you have cancer.

It is considered a "disability" and IF someone chose to fire you
for having cancer they would have a big a** lawsuit on their
hands.

They can try, but you have a disability claim against them that would
be big trouble for ANY employer that chose to fire you for having cancer.

You are protected with the ADA (Americans with Disability Act--something
like that...)

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Dorien,

True, you cannot be fired.  But, if you are looking for a new job, nothing prevents a company from not interviewing you in the first place.  Almost impossible to prove unless they are really stupid.

Fighting with dignity, not desperation.

Live, Laugh, Love

12 (edited by kris00j Sun, 09 Mar 2014 23:18:22)

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Sorry to tell you, but there ARE companies that let us "sick" people go. I worked for one of them. I chose to let them get away with it (yes, it IS illegal) and fight cancer, not those jerks.
As far as prospective employers, they aren't SUPPOSED to weed you out because of an illness, but let's be realistic. It happens...
I consulted a lawyer. Because the company I worked for let 11 people go, including myself, the lawyer said it was still illegal but would probably take years to get through the court system. So big A$$ lawsuits take time and energy that most of us can't afford to spend in that direction. I had applied for short term disability only, and wanted to fill out the FMLA paperwork before my surgery. I found out why they were putting that off!!
As far as Google... I searched my name and it didn't come up. I checked my profile after I wrote this, and found I never put in my real name.

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: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Going back to the original post, I think the new site or the new compilation of data, has corrected the issue as long as you don't include your last name when you register.

Can others check this out?

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME

Duke...all forums work the same...information is public.  Personally, I think we are way beyond doomsday when it comes to protecting our privacy, but please read below disclaimer:

Discussion Board Login Information and Disclaimer
If you elect to post comments on any of the public discussion boards provided on the Cholangiocarcinoma Foundation website you will be required to select a username and provide your email address. Your username will be public, which means it is available to everyone and will be displayed in search results on cholangiocarcinoma.com and on external search engines. Please select your username carefully. Your email address and all other personal information will remain private, unless you post it on the public discussion board area of the website.

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