I really wish...

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Bugs
Bugs Member Posts: 1,719
edited June 2014 in Stage III Breast Cancer

That there was a way to flag posts that are going to be discussing statistics.  It seems like there are a lot of them lately and I feel like that's all I'm reading.  I'm all for learning ways to stay healthy to help reduce recurrence risk.   I guess I just want a little warning so I can decide if I want to read the posts that disect pathology & recurrence risk. 

Most days I can skim over them...but everybody has the "the elephant is in the room" days and reading statistics can sometimes make those days worse.  Yesterday was one of those days for me :)

I am in NO WAY directing this post at anybody in particular.  Just asking in general if we could all keep in mind that some people don't like hearing about statistics.

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  • AsiaYM
    AsiaYM Member Posts: 2,216
    edited December 2009

    Hi, Bugs,

    You got a point there !

    Maybe they can Start New Topic with title of " Statistics --"

    Thanks,

    Karen

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2009

    Yes, I have also though that they might be better placed in "Not Diagnoses with a reoccurance but Concerned", as that thread is really for discussing the faer of a reoccurance. I hope people are more sensitive to other peoples circumstances.

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited December 2009

    Excellent idea. No matter how often the question is asked, the answer is not assimilated. Neither the medical teams, nor ourselves can possibly know the answer to recurrence. This is very, very similair in stress levels to what we get on stage1V with posts like "I have headaches, could it be brain mets", "my back hurts, could it be bone mets?". It gets incredibly upsetting for those of us who are trying to live our lives as best we can, to keep being faced by questions to which there are no answers. Granted, skip over the topic-but most of us do want to try and help-catch 22 situation? But some kind of alert, at the very least would be helpful.

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  • weesa
    weesa Member Posts: 707
    edited December 2009

    I can understand well not wanting to know some of the details of the statistics of recurrence. In fact I kept myself sheltered from this whole web site until I could handle it--which was 6.5  years!

    The discussion yesterday was helpful to me for several different reasons: I am wrestling with whether to restart the AI's after a six month hiatus--or not. Understanding the current statistics about recurrence after AI's was helpful to me in my own personal decision. And this is a problem for several other active women on the stage 3 forum right now. And will be a problem as more girls get further along on their AI treatment.

    The other reason I find it helpful to have some knowledge of stats is because I volunteer for the Reach for Recovery program and meet many women just after a mastectomy. Invariably, chances for recurrence are high on their minds and they want to discuss it with me. (I always tell them what the research shows if they want to hear it, but assure them they are a unique individual IMO.

    But your point is well taken--tuck the statistics away in its own location for those who are strong or curious enough to delve,

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  • Pure
    Pure Member Posts: 1,796
    edited December 2009

    I think the stats are important sometimes so we can decide on treatment, what ALS to take, etc. There is some value to the discussion. I jsut don't like talking about survival stats but I will say one of my first posts ever was about "will I make it" "can stage 3 be beat?" etc. When your new to this that, is what is on your mind.  I try to post in a positive light  and honestly when people post negative stuff I get upset and wonder why they post that type of info unless it's in a effort to encourage someone to get treatment.

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  • Bugs
    Bugs Member Posts: 1,719
    edited December 2009

     I don't think it's a matter of being strong enough to read them or not.  For me, personally, it's a matter of "it's either gonna recurr or not" and I don't like to dwell on percentages.  We could discuss statistics till we're blue in the face and in the end put 10 of us in a room with very different pathology reports and it's still a crap shoot on who will recurr.  

    I'm not saying to tuck it away...I agree that these discussions can be very informative (i.e. AI's after the 5 year mark). However, maybe marking the title of the post so a person has the option to read or not even open them at the time?  Like Karen said, just the word (statistics) in the subject line would be enough.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2009

    I think sometimes people ask a question about a symptom or diagnosis and then are disappointed or scared when they get the answer they didn't want to hear! It's like they want verification that they will be okay, but no one knows! Or, on the other hand, there are those that think only they will get worse or have bad side effects or argue with posters that try to "calm" them down.

    There is a lot of fear on the boards lately and it's undertandable. We have lost an awful lot of women this year and this time of year is an emotional one for everyone. Between Christmas and New Years and wondering if this is your last....well, it all gets swept up into a painful post for someone.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2009

    I try my hardest to stay away from stats - I realized early on it did nothing for me.  I want to live my life the best that I can if it's 1,5,7 10, 20, 30 or more.  My plans are to grow old and wrinkled, but I don't know what will happen.  So............. if I stay away from my stats and the gloom of them and enjoy life with my family and friends we are all better off for whatever time I have left.  It doesn't do me or my family any good to for me to focus on the poorer outcome, it only causes stress for us all.  Do I worry and have bad days, yes. But....I really don't think much about me dying anytime soon. 

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  • Carmelle
    Carmelle Member Posts: 388
    edited December 2009

    Hi Bugs,

    See our diagnosis and path report are really remarkably similar. Today is my son's 10th brithday he had just turned 3 at my diagnosis and I had 1 year old also. All a distant memory except for once in a while.

    You are not a statistic my dear.

    Michelle

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  • Pure
    Pure Member Posts: 1,796
    edited December 2009

    One thing I do is try to stay away from the negative posts-sometimes I get onto stage 4 posts and it ruins my day b-c I am so sad for that person etc. I wonder how we would feel mentally if we took a break for 1-2 weeks.

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  • sugarplum
    sugarplum Member Posts: 318
    edited December 2009

    Bugs dear - you were one of the FIRST to welcome me to this forum - I'm just a couple of months behind you in my journey. I'm glad we're both still going strong, and I echo your concerns about obsessing on stats (especially because mine always look so terrible!) My DH always says to me "it's 50/50 - either you will or you won't" (he's the realist in our relationship - but even that's more comforting than my constant pessimism!).  

    Oh well - I woke up today, I'll most likely wake up tomorrow, and that's all any of us have for now. Love & best wishes to all...

    Julie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Sometimes I just get so depressed wondering about statistics and comparing in my mind other people's stats with my own stage 3 stuff.  I also get upset if I read some of waht they face over on the Stage IV forum.  I've grown to like some of those girls and sometimes follow what is going on with them if they post something that I see on Active Topics.  Bugs I do feel the way you do about stats and especially lately I've been a little down and hate reading the negative things coming out about BC.  I haven't been posting much lately. 

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  • DCMom
    DCMom Member Posts: 624
    edited December 2009

    Reading a bad statistics is like hearing one of those songs that gets stuck in your head.  I have flashbacks to a bad stat and so I really try to avoid them,  I have always been ready to throw the sink at this regardless of my stats and I have complained previously about my oncologist trying to "scare" me into chemo with stats and then telling me to be positive.  The fact is sometimes stage 1's recurr and sometimes stage 3's don't.  That's all the stats I need to continue being as aggressive as possible.

    Shanagirl- I posted almost a month ago about stats and how they can really bring me down.  The sad part is they jump all over the place and have such a range.  I try to remind myself that scientists can truly make stats do almost whatever they want to make their point.

    I'd love to see a warning on stats (unless of course they are really good ones of things to do to improve stats with only the increase.  I love adding those up).

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