Dr Google deserves more credit these days

Options
2»

Comments

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited July 2017

    Hi All,

    I'm going to weigh in here as I feel there is an additional reason to avoid Dr. Google. It can be particularly worrisome when you are looking for specifics on advanced disease. When I was diagnosed with malignant pleural effusion I was convinced I had less than two years to live, possibly less than a year! This is certainly not the case as I now know but Dr. Google gave me a bum steer. The stats are out of date and most of the info is related to lung cancer. Scared the you know what out of me. I joked that I planned everything except my funeral between diagnosis and my first appointment with my oncologist. So for those with recurrence Dr. G is not your friend.

    The reason that I rarely post on the not diagnosed but worried thread is the same reason that I am mindful of posting outside of the stage IV thread, I don't want to worry people unnecessarily. My story is not your story but I am sure folks look at my situation, recurrence more than 15 years out, and feel somewhat hopeless. I know there are a lot of us advanced Stage ladies (and men) with a lot of experience with this crappy disease who are afraid to instil panic before they are even sure there is an issue. Personally, it would be helpful to me if only Stage IV could see my diagnosis and treatment. It's such useful info for those in the same boat but scary stuff for those less educated.

    Oh, and I hate FB. No "likes" please.

    · Share on FacebookShare on Twitter
  • Lucy55
    Lucy55 Member Posts: 3,044
    edited July 2017

    Sadiesservant ..yes ..I can see how outdated some of the stats and studies on stage 4 are :..We only have to look at so many people living long happy lives after diagnosis on this site to know that ..please never be put of from posting ..15 years cancer free gives us all HOPE !!

    I fail to see how a " like button " can cause anyone grief ...now ..a "don't like " might be another story 😵

    · Share on FacebookShare on Twitter
  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    Closed Facebook group pages can be used as message boards, and medical FB pages operate in this way. Note, FB closed group posts don't go outside the group. Questions are answered, experiences shared, and links to appropriate resources posted. I believe social media sites that use real names are more civil than sites that use avatars, because the cloak of anonymity is not available. Wisdo.com has a breast cancer support group and their motto is: "We are all here for each other. A safe place to talk openly without fear of judgement. This is where we can share our real feelings!" While I fully understand that that's not the motto here, I prefer the hard edge to this site, since I can give as well as take if that's necessary.

    Artista is right, BCO is a collection of cliques. People in various disease stages have bonded over the years and they support each other. But newcomers often serve a probation before being included. Yes, I'm a guy, but this disease is genderless and I can bring a male perspective and differing concerns to the boards. Like Lucy55 I love the longevity of this site and hearing stories from those long-term survivors. While I don't like losing people from my IBC clique, I know that those of us continuing are living longer because of our support for each other.


    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Wrenn - Traveltext is a feature on BCO as a male with breast cancer. We're so glad to have him.

    Still - I personally don't like & don't want to do Facebook. I would not appreciate a "like" button. I think people need to express what they think with words Breast cancer is not an easy topic like having chocolate ice cream for lunch, or learning how do stand-up paddle board.

    · Share on FacebookShare on Twitter
  • wrenn
    wrenn Member Posts: 2,707
    edited July 2017

    I know he is male but was wondering how that related to the conversation. I often miss the point these days so just wondered if the fact that he is male somehow changed the way he thought about google or likes

    · Share on FacebookShare on Twitter
  • LimnoGal
    LimnoGal Member Posts: 157
    edited July 2017

    Sadiesservant-I understand what you are saying with respect to having your your diagnosis information available to any and all viewers.

    However, from a different point of view, I learned a LOT from posts I read from several women and men with advanced diagnoses. The diagnosis info helped me sort out posts in my mind- those from folks with lots of experience vs. those from newbies (like me at the time). A measure of street cred, if you will. And rather than the diagnoses scaring me off, they were a huge comfort. It was proof positive that you didn't drop dead within days of your diagnosis, and that treatment was do-able. Seeing those diagnoses made me realize that life really does go on.

    So, thank you all for your help. It has been invaluable to me.

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2017

    I hope the mods are reading this: I will never be on facebook, closed group or not. I don't trust them at all and would never register there. And I don't like how it works. I hope there are no plans to move BCO there, as that would be a very great loss to me. The only stage iv support I can access is here on BCO. And it needs to be anonymous or I can't be here.

    I see no use for a like button. Better to type a short comment such as "I agree" or whatever it is you want to express.

    Sadiesservant, I like your idea of having the option to display our stats or not by forum. Or how about even by post? I, too, sometimes have a useful comment to share but am afraid of scaring people. Sometimes my stats are relevant and sometimes they are not. Edit: But I just read the post from Limno .Thank you so much for sharing that perspective.

    It is to be expected that any large group of people will form sub-groups. It shouldn't be a problem as long as people are tactful in their conversations and welcoming to newcomers, which most are. Most. I don't experience BCO as a "collection of cliques". And I do my best to be inclusive, as do most of us.

    · Share on FacebookShare on Twitter
  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    wrenn, I just interested in the future of digital media generally, so not sure if this a guy thing. BCO, as far as I'm aware, don't intend to abandon this forum. Rather they are aware of falling participation rates here and looking to connect to, most likely, a younger audience that spends lots of time on social media. Their FB and Twitter presence is all about bringing people here. BCO is somewhat institutionalized, both in the management, and many of the long-term people posting here, and I can understand why there is resistance to change. However, since the Internet is a dynamic entity governed by its users, it will be they who determine the direction and success, or otherwise, of this or any other any site. We all remember Alta Vista and MySpace.

    The potential audience for this site is the 250,000 newly diagnosed women and 2,500 men annually diagnosed with breast cancer in the US who are having issues with their diagnosis or treatment, not to mention a few hundred thousand more people worldwide who speak English or Spanish . A minute proportion of these people currently use BCO.

    It would be good if BCO management could update us on the future of this site and the changes they have in mind. That's when the real debate will begin.


    · Share on FacebookShare on Twitter
  • Freya244117
    Freya244117 Member Posts: 603
    edited July 2017

    Rather they are aware of falling participation rates here and looking to connect to, most likely, a younger audience that spends lots of time on social media.

    When you talk about a younger audience, what age group are you talking? It would seem odd to target 20 - 40 yr olds for example because they use social media, when the age group that gets BC the most is 45 - 75, around 67% ( although I was younger than that). Some stats on social media use.

    Like some others here I dont have facebook, twitter, instagram etc accounts. I am a private person, and even the information on my dx and treatment is very basic in my signature.

    · Share on FacebookShare on Twitter
  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    By younger audience, I mean people 50 and under. It's certainly interesting from those stats to note that around 70% of US adults use one or more social media sites. FB last week announced that there are now 2 billion active users (defined as using once a month) worldwide.


    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Yes, many of my friends have had to succumb to facebook if they wanted to see their grandchildren at all. They are not happy how it has taken over their lives. I am not happy going to dinner with grown-ups who spend the entire meal looking at their damn phones. I don't like it when millennials do it either, but it's not so disappointing. I don't mean to sound like an old curmudgeon. I just think there should be boundaries, and the dinner table should be one of them.

    I have received a lot of advice and support on this site. I left after my first go round. When they found a recurrence, I came back. I believe in paying it forward. If I can help even one person with one tiny thing, I will do so. HOWEVER - if this site turns into "facebook lite", I will have to say good bye.

    · Share on FacebookShare on Twitter
  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    Hmm, I can just see us scrolling the pages of BCO at dinner parties. "Hey, check out this neatmastectomy".


    · Share on FacebookShare on Twitter
  • Lucy55
    Lucy55 Member Posts: 3,044
    edited July 2017

    Minus Two ..I often read your posts helping to support people on this site , and I always think what a comfort and help you are to so many ...so please don't leave , whether a like button is installed or not .

    Traveltext ..HaHa ..I would definately hit the like button on your last post ( if there was one , of course ) !!!!..


    · Share on FacebookShare on Twitter
  • TB90
    TB90 Member Posts: 992
    edited July 2017

    If it had not been for Dr. Google, I have no idea how I ever would have managed. There is so much misinformation out there shared with us in every fashion, including the often unwelcome advise of others. We only have to turn on the news for an instant to recognize that facts are just not valued the way they used to be. We all have to carefully scrutinize the info we receive no matter from where and I find it somewhat patronizing when professionals tell me to stay off Dr. Google. Here in Canada they spend so little time educating and providing information that I would have known nothing if I had not researched myself and then been led to this forum. Beesie and others saved my sanity (somewhat :) and although I almost fainted with fear once while researching something, I want all the info and I will decide what is useful for me.

    · Share on FacebookShare on Twitter
  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    I agree, Traveltext, that if you Google "breast cancer," many of the first sites to pop up are respectable. However, like many here, I do worry about the person who Googles various terms (e.g., "rash on breast") and quickly jumps to the conclusion that he/she is dying.

    I have to admit that I don't respond much to the "worried, but not diagnosed" posts. Unlike djmammo, who knows a lot about radiology, I don't know much about how to interpret scans. I also don't know much about benign breast conditions. Like many on here, I respond to posts that I feel I can speak to -- I have more to offer a newly diagnosed person who is HER2+ or triple positive than to someone who is triple negative.

    I personally wouldn't care for a "Like" button, but then again, I don't do Facebook, Twitter, or Instagram either. This place shouldn't host a popularity contest; it should be a place where people can vent and complain and (civilly) discuss various topics. It is messy and repetitive (there must be at least 50 threads where people kvetch about the AIs). However, this site gave me the most realistic understanding of what chemo involved and different ways to address its side effects. I will never forget the comfort it provided me during the worst period of my life.


    · Share on FacebookShare on Twitter
  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    My regular doctor encourages me to use authoritative medical web sites. She says, I use the Mayo Clinic site all the time. ElaineTherese is right, though, search terms vary and more dubious results can be delivered to freak people out. Then they turn up here for clarification. But I agree with TB90, we all have to carefully scrutinize the info we receive no matter where it comes from.

    I'd suggest most regulars here would regard themselves as patient advocates, and follow their treatments based on all the knowledge they garner from the internet or professional sources. That's why, when you've been here for years, you do have lots to offer newbies, as in "Beesie and others saved my sanity."

    While BCO is a bit chaotic, there's nothing that hasn't been discussed and, with the search function, you can read it all. The BCO FB page doesn't carry medical comments, it's really just promoting bc matters and even includes links to the forums here. There's no way this FB page will ever supplant or replace the discussion forums here.


    · Share on FacebookShare on Twitter
  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    I can see the like button creating a popularity type of contest/feeling v the person having to actually either say ditto so and so are take a moment to write their thoughts. I don't care for fb either. I only am on there to see pics of fam otherwise I can't stand seeing 10 like for something without anyone saying a word about what is it they like about it, esp if it's something that could be controversial or taken wrong. I don't care for emoticons either as a replacement for words. Too impersonal. Such a site like this that is personal imo shouldn't start looking fb or tweeter ish.

    · Share on FacebookShare on Twitter
  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2017

    I'm not a big fan of FB except to post family pics for family and friends but I do support many animal rescue sites too on FB. I have learned to steer clear of abuse stories because it is too upsetting plus they run the same stories multiple times.

    There are people who post their life histories on FB as well as what they are doing every day. No offense to them but who cares? Pretty self centered if you ask me.

    I had a patient advocate from the getgo. She was awesome. Thiswebsite was one of the ones she suggested I check out and I'm glad I did. It has been my lifeline. I have also made friends outside the website and our common DX.

    I have to admit I had an experience with breast bruising and surfed the net for answers. I was terrified of what could have caused it. Still don't know but it's long gone. Had it not disappeared I was planning on making a trip to my doctor. Idk if I will ever be over the fear factor with breast cancer despite being 6 years out next month.

    Diane

    · Share on FacebookShare on Twitter
  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    OMG I can't stand seeing people just post random things. Close fam maybe, but I'm going to Arbys for dinner or I'm watching this movie just clogs up FB. I don't want to hurt their feelings by unfriending them so most of my 'friends' are on do not follow mode.

    · Share on FacebookShare on Twitter
  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited July 2017

    Ah, yes—MySpace (I forget who called it “God’s abandoned Internet playground”). I do FB (but since I joined BCO, not as often), for its Messenger and the ability to reach out to friends, relatives & my music’s fans in general; I also use it to post quips or make political statements (I don’t do memes). And when I had updates to my CaringBridge page, I announced them on my FB page. For some forgotten reason, I started a Pinterest account but have yet to “pin” anything. If I like something enough to post a picture of it, I put it up on FB. I keep getting e-mails that so-and-so is now “following” me on Pinterest, and that my Pinterest friend so-and-so (I’ve never made a friend request or followed anyone) has “pinned” something I should see. For the same reason, I’ve never felt the need to get an Instagram or Snapchat account, either. The only reason I have a YouTube page is that it’s easier to direct people there than to try to embed videos on my website (which I built from the host’s templates, since I lack the patience to try HTML coding).

    But Twitter? Yeesh, it takes me 140 characters just to clear my throat! The few times I’ve posted there were either because I could make a short quip or it was cross-posted from FB. The day BCO moves its platform to Twitter, Instagram or Pinterest (can you imagine “pinning” pics of your reconstructions?) is the day I take a sledgehammer to my computer and iPad.

    · Share on FacebookShare on Twitter
  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    I'm on a couple of different cancer FB groups, but try not to confuse my disease posts with my personal FB page which is for family stuff and a few friends. As to the latter, I mostly turn off notifications to avoid too much extraneous "noise". Twitter is my new communications fave for one topic only, male bc advocacy. It is just perfect since I'm followed and following the main bc charities and the heavy tweeters in the male bc game. I know some people can't get out of bed for 140 characters, or like Chi, clear their throat, but it's not about long chats or complex discussion, rather for brief comments and links to appropriate sites and discussions. For reaching those making decisions and for infiltrating people's headspace, Twitter works a charm. A retweet from a big Twitter account can move my comments from hundreds of followers to thousands. Pinterest, Instagram, Snapchat have their devotees, but I also ain't one. There's only so much communicating one can do, and I don't think they would work in my fields. Wisdo, I've just discovered, has a few bc chat groups growing followers at a great rate but, although great support is offered those in psychological distress, for medical detail it's definitely a case of the blind leading the blind. I cancelled my account after two days.


    · Share on FacebookShare on Twitter

Categories