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Topic: Chat Rooms at BCO.... need your feedback

Forum: Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts —

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Posted on: Feb 21, 2013 08:11PM

Moderators wrote:

Hi All, 

We are considering upgrading (in a much needed way!) the chat rooms. But before we do that and spend the money, we wanted to know how many of you use them/value you them. Is it a good feature of our community? If we no longer had them, what would that mean to you? 
Open to your feedback!

Many thanks, 

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...

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Posts 1 - 30 (129 total)

Feb 21, 2013 08:16PM maryannecb wrote:

I tried to use them in the beginning but felt intimidated by not knowing the others. Discussion boards are slower paced and the ability to back read is great.I never went back.

Fists up! Dx 9/20/2005, IDC, 6cm+, Stage IIIA, Grade 2, 2/14 nodes, ER-/PR-, HER2+

Feb 21, 2013 08:18PM Stormynyte wrote:

Same here. I tried them once. I entered into a very fast  convo with people who knew each other and felt out of place. I prefer the boards as well. 

It can't rain forever. Dx 10/28/2011, IDC, 3cm, Stage IV, Grade 2, 4/11 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/1/2011 Surgery 5/17/2012 Mastectomy: Right Chemotherapy 11/26/2012 AC Chemotherapy 1/28/2013 Taxol (paclitaxel) Chemotherapy 2/20/2013 Taxotere (docetaxel)

Feb 21, 2013 08:23PM sewingnut wrote:

I've never been able to get into them.

Dx 12/2010, IDC, 5cm, Stage IIIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+

Feb 21, 2013 08:23PM Moderators wrote:

This is helpful! Thank you! Please keep the feedback coming!!!!

To send a Private Message to the Mods: community.breastcancer.org/mem...

Feb 21, 2013 08:25PM exbrnxgrl wrote:

I never tried to use them either. I feel very comfortable with the discussion boards and don't foresee venturing into the chat rooms.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

Feb 21, 2013 11:28PM nikki_d wrote:

I have found chat to be a great help - especially when my friends and family were plain wore out from cancer talk.  I can ask questions, have some laughs and make some new friends.  Chat is a huge support and has helped me through some rough times.

Dx 6/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 7/6/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 8/29/2012 CEF Hormonal Therapy 1/16/2013 Radiation Therapy 1/17/2013 3DCRT: Breast

Feb 21, 2013 11:31PM Ariom wrote:

I tried when I first found the site, but never managed to get onto them either.

Dx Mondors Disease (cording) after Umx and "Dog Ear" removed 14 months post UMx .................. The Dx shuffles you like a deck of cards and then deals you a new hand! Dx 11/2012, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes Surgery 12/18/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right

Feb 22, 2013 02:53AM CelineFlower wrote:

I have been involved in chat rooms since 1997....



I find they are useful in many ways.



1- For our alt media forum, it keeps the posts in the thread "clean" from chat type posts. Since many threads are used for reasearch , it can be very helpful.



2- Creates bonds , and allows for emotional immediate expressions. Which can be a good thing and a bad thing. "Reading pp" is vert difficult online and misunderstandings abound and lead to forum drama



3- Chat is a life line, for many lonely people.



It is my feel that at bc patients many would benefit from it ... but the advise id offer is to beaware of the public aspect of chat and the lack of tools available to read body language, self moderation is very important when using chat rooms... 



When we post... we can go back and edit etc... chat, you cant do that...



So after all that.... yes i would use the chat rooms 

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me! ~Dr. Seuss Dx 8/31/2012, IDC, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2- Dx 9/17/2012, LCIS

Feb 22, 2013 10:09AM mags wrote:

I think it would be such a shame if the chat rooms disappeared. I don't use them now but they were a lifeline when I stumbled into them 8 years ago. I was living abroad in a country where I barely spoke the language. I was due my first mammo after having surgery and was so worried about the results. The chat room gave me a place to go where I could talk to people who actually understood what I was going through. I don't know how I would have gotten through it without them. I made such good friends in there. Ladies that I still keep in contact with now. I do understand the monetary issues but I think it is important to try and keep them open. 

Mags

Feb 22, 2013 10:14AM misha99 wrote:

I am not sure you will be able to quantify the value of the chat room using statistics.  There is a group of long time chatters.  We support each other.  Some have had meet ups.  Some check in with old friends when they reach an anniversary, others come in every night.  We support people who stumble upon us and are often in crisis.  We give practical advice to others who have a struggle or concern.  We refer a lot of people to authoritative information on BC.org when they receive inferior information or bring bad science into the room.  I prefer this chat room to chat rooms in person.  The reason for this is that I am a strong independent woman and I dont really enjoy going into my community when i am at a low point.  I also didn't want to go to a face to face group when i was sick and miserable --which i was for the duration of 6 chemo treatments that made me violently ill-- some nights i only had enough energy to watch the screen scroll, but it helped to see that the ladies ahead of me were feeling better.  I am sure money is tight, but there are so many chat services and forums out there.   The groups obviously are hungry for real time contact by virtue of the fact that so many bco facebook groups have been started.  Despite the fact that we want this all to stay private we participate in these groups because we have a need to do so.  The groups have gotten much more popular as technology changes and people are using tablets and phones.  I think ending chat would be a huge mistake.  You also have to take into consideration the ongoing nature of your service.  As younger women are diagnosed they will be looking for online support   and I don't think their first choice will be a disc board.  They will prefer real time communication and support.  If anything you should look at more organized chat sessions with moderators or guests who arrange to be in the room for questions or topics.  That is my 2 cents.  misha99  1 year 3 months in chat

Feb 22, 2013 10:31AM GRITS wrote:

As a chatter from 2004 you would think I would no longer be in need of a chat room. I will say that my current need is not as strong, but once you travel this journey you are forever touched by those who helped you along the way. Sadly many of the chatters face new issues years down the road and having that group around you makes it easier to bare.

BCO is that common thread, when in chat everyone feels the nervousness of the first timer, the anxiousness of the unknown, and the urgency to find answers to even the simplest questions. In chat we never consider any question too small. Perhaps the discussion boards provide a reliable source of information and support, but in chat cancer is the main subject, but support is the main goal.

I would hope all feel welcome, we should strive to make that happen in chat. Yes many know each others family and the events they are expericening, only because all of their lives have been touched by breast cancer and someone was there for them during this time. If chat is able to relieve that horrible sense of overwhelming fear, the fear that I experieced in the beginning, then the chat rooms is a very important part of the BCO family.  I hope you will condsider this in your review.

Dx 2/18/2004, IDC, 2cm, Stage IIIA, Grade 3, ER-/PR-, HER2-

Feb 22, 2013 10:38AM lindabrit wrote:

I value the chat room greatly, it was like a life line after my diag and during my treatments of chemo, surgery and radiation which were all so unkown and scarey. The girls in the chat room were so supportive and knowledgable, it was so nice to connect live with people in the same or similar situation.  Also as I am alone it is nice to go into chat in the evening and talk to people in the same situation. Please keep the chat room open. The other type of boards are not nearly the same as the live connections in the chat room. Many in the chat room have even met and exchanged phone numbers which is a great support when going through the nightmare of breast cancer.



Thank you, Linda

Dx 1/31/2012, IDC, 5cm, Stage IIIC, Grade 3, 1/12 nodes, ER-/PR-, HER2- Chemotherapy 3/10/2012 AC + T (Taxol) Surgery 8/19/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 9/27/2012 Breast, Lymph nodes Hormonal Therapy 11/20/2012 Femara (letrozole)

Feb 22, 2013 10:47AM exbrnxgrl wrote:

I want to say that although I do not use the chat rooms it seems that they are valued by those who do use them. I do not know all of the considerations and financial constraints involved in maintaining them but I hope that they remain open for those who use them.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

Feb 22, 2013 11:08AM 1Athena1 wrote:

I find them intimidating in principle, but the few times I have tried to get in there is no one around.

I might use them if there were some structured events with defined rules that you could sign up for.

I think they are a great asset - not for everyone, but BCO could make them more appealing by using them for topic-specific events and conversations. Those who feel comfortable in free form could also use them that way.

Mods - could we have a return of the Ask the Expert using chat? That is done elsewhere with enormous success.  

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us. Dx 3/2009, IDC, 3cm, Stage IIB, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-

Feb 22, 2013 11:27AM - edited Feb 22, 2013 11:32AM by exbrnxgrl

So this thread piqued my curiosity and I tried to enter the chat rooms. All I got when I clicked on the link on the left side toolbar for chat room, was some general info on registering, chat etiquette, abbreviations etc. How do you actually get to chat? It seems it should be easier ! ETA: just read that there are problems with chat and tablets. I usually use my iPad but will try it on my laptop.
Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

Feb 22, 2013 11:33AM tinkermax wrote:

I've not been here in a long while, I was dx in 2005, and use to practically live in the chatroom ... everyday I was there, and I made some terrific friends, who I still keep in contact with. 

The chatroom was the place to hang out, compare treatments , talk of many things, we maybe couldnt speak to family about.

I would hate to see the chatrooms removed.  I do recall also, that a lot of friends who went to the chatroom, didnt actually use the forums very much, so this post, might not even be seen by many who do " chat".   Might be a thought for a moderator, to pop in on occasion, to let the people in chat know, the issues raised here.   Just a thought...





Feb 22, 2013 11:35AM mags wrote:

That's strange, I got a box asking permission to run the application and then the usual name and passoword boxes further down the page. Maybe it's because you haven't acutally signed up for chat.

Feb 22, 2013 11:48AM Held wrote:

I think it would be a shame to lose the chat rooms. I don't use them as much as I did when I was first dx (2007), but in LIVED in there then. Those women saved my life! Being able to get immediate feedback and comfort was just what I needed. I am not sure i would have made it without chat. They made me feel less alone. Real help is provided as well as general sharing of day to day happenings. Don't take it away!

A good friend will come and bail you out of jail....but a true friend will be sitting next to you saying.....Damn....that was fun! Dx 9/6/2007, DCIS, 6cm+, Grade 3, 0/3 nodes, ER+/PR-

Feb 22, 2013 11:54AM exbrnxgrl wrote:

Nope, no luck on lap top either.
Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

Feb 22, 2013 12:02PM - edited Feb 22, 2013 12:03PM by Soteria205

I've never been able to get into the chat rooms. I've tried several times. I have no idea what I'm doing wrong. I'm signed in, but can't access chat. I'm usin an iPad also.


Blessings
Paula

FIGHT LIKE A WARRIOR!!! Dx 7/27/2012, IDC, 5cm, Stage IIIC, Grade 1, 13/16 nodes, ER+/PR+, HER2- Surgery 10/21/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/6/2012 AC + T (Taxol)

Feb 22, 2013 12:08PM maryah930 wrote:

I started to use chat room a couple of months ago, but the people in the room obviously knew each other well and I felt like the new kid in school. That said, I was made to feel very welcome, I was greeted by everyone and the "real-time" support I was provided was great.  My questions/concerns were addressed immediately, which is what I needed at the time.  The women who regularly utilize the chat rooms are warm, open, and because of their different experiences/diagnoses, an invaluable resource.  Real-time support is needed on BCO as I have asked questions or needed something addressed and, because it is not real-time, it did get lost in many posts on the discussion boards. 

I have also seen questions or concerns asked by others with little to no response simply because of the number of posts and, in my humble opinion, as we move on from our "urgent" phase to our "maintenance" phase of BC, relationships and friendships are forged on the discussion boards and when people log on, I think they look for and respond to posts from friends and not all posts requesting a response on the boards are addressed.  Not because people don't care, but we go back to a "normal" life and get too busy.  Chat rooms, on the other hand, may get busy and chatty, but concerns/questions are noted by at least a few and responded to immediately.



Dx 9/13/2012, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/16/2012 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/21/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/1/2013 Femara (letrozole)

Feb 22, 2013 12:12PM lindabrit wrote:

I think you have to have Jarva on your computer.

Dx 1/31/2012, IDC, 5cm, Stage IIIC, Grade 3, 1/12 nodes, ER-/PR-, HER2- Chemotherapy 3/10/2012 AC + T (Taxol) Surgery 8/19/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 9/27/2012 Breast, Lymph nodes Hormonal Therapy 11/20/2012 Femara (letrozole)

Feb 22, 2013 12:13PM lindabrit wrote:

Sorry it is spelt Java!

Dx 1/31/2012, IDC, 5cm, Stage IIIC, Grade 3, 1/12 nodes, ER-/PR-, HER2- Chemotherapy 3/10/2012 AC + T (Taxol) Surgery 8/19/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 9/27/2012 Breast, Lymph nodes Hormonal Therapy 11/20/2012 Femara (letrozole)

Feb 22, 2013 12:15PM cheryl1946 wrote:

I have never gone into chat rooms here or at the transverse myelitis site.

I prefer the boards and private messaging.

DX 7/6/11 with stage IV at the start;mets to several bones No surgery,rads,or chemo letrozole failed after 17 mos. 2 other hormonals failed; now on to xeloda Dx 7/6/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-

Feb 22, 2013 12:42PM exbrnxgrl wrote:

I have Java on my lap top.
Mags, the help page makes it sound as if you are already a bco member you don't need a separate sign up for chat. I can't even access a start page for chat, just info and help!

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

Feb 22, 2013 12:45PM Marple wrote:

When I joined the chat it was lively 24/7 and I used it totally instead of the boards.  It was a real life saver.  I've not been on in ages though. 

Dx 2006, IDC, Stage IIB, Grade 2, 1/14 nodes, ER+/PR+, HER2-

Feb 22, 2013 12:48PM Neeners815 wrote:

I don't know what I would have done without the chat room when I first was diagnosed.  Yes, I posted on the boards, too - but the chat provided quick answers, support, and love.  I've grown to hold many of the ladies in chat close to my heart, and consider them real friends.  I've even met two of them!  It would be a very sad day indeed if the chat was forced to close due to cost.  If it comes to that, how about having a "save the chat" fundraiser to help with the costs of the upgrade?  

Dx 3/6/2012, DCIS, <1cm, Grade 3, 0/0 nodes, ER+/PR+

Feb 22, 2013 03:15PM - edited Feb 22, 2013 03:15PM by md_mouse

After my dx in 2007, I was asked to go into the chat room by another chatter that posted on a forum.  I have been going there ever since.  While at first I didn't feel like I should be there, I was quickly told that I had the same dx as everyone else even if I didn't go through chemo or rads.  I have forged many, many close friendships with people and have been able to chat with a few newbies that plan to have the same surgery and I did.  The chat room, I find, is a very good place for the newly dx'd and care givers of newly dx'd for information, understanding, and a place to share/vent frustration/emotion in a secure loving environment.  For some, it is the only place they can go to share their feelings as they don't feel comfortable telling their loved ones how they are feeling for fear of causing additional hardship on them.  Please keep the chat room, there are more people (men and women) being dx'd everyday and it would be a shame to not have a loving, caring place for them to go to share and find comoradory (sp) with others that have been the in the same situation.  Thanks

Feb 22, 2013 03:43PM - edited Feb 22, 2013 03:45PM by kokothegorilla

I have used chat rooms for seven years. Often, during the weeks after chemo, these ladies literally kept me alive. They shared their knowledge, experience, love, prayers and far more than I can explain. With so many people continuing to be diagnosed these rooms are invaluable. We need our chat rooms; please. Thank you.

Feb 22, 2013 05:39PM kitkat123 wrote:

Please do not remove our chat room!  This the only way most of us can stay connected, since we met here whether years ago, or a day ago.  I do not have a smart phone, nor anything fancy.  This room saved me when I was diagnosed in 2006, and met so many helpful members.  They would cry with me, and laugh with me.  We have special events in both rooms, some to light candles for people that we have lost, or just to have a private chat.  I was alone when I found out I had cancer, and this site is the only thing that kept me sain.  I have met some of my friends, and speak to others by phone.  But, most of the time this is the only way we can get together as a unit.  PLEASE DO NOT GET RID OF OUR CHATROOM!!  Sincerely Yours, KitKat123 also known as Kathleen Conley from NJ.   Please Safe Our Site!   P.S.  Some of us are now very good friends, but can not travel across the pond or across America to meet.  PLEASE PLEASE DO NOT REMOVE OUR BELOVED CHAT ROOM! 

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