Heads up Moving Onsters

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Member_of_the_Club
Member_of_the_Club Member Posts: 3,646
edited June 2014 in Life After Breast Cancer

There has been some concern on the recurrence and mets section that women who don't have mets have been posting a lot with their fears about joining that crew.  The women doing the posting have the same anxieties we've all had and it is understandable that they want to express their concerns, but this has been causing some pain for the metsters.  It just isn't helpful when you are fighting for your life to have someone pleading for reassurance that they aren't you.  So I suggested that women come here (on any other relevant section, like Stage III, Going through chemo, whatever applies).  We have a lot of experience here with good followup care, including for troubling symptoms, so lets encourage each other to do this.

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  • AnneW
    AnneW Member Posts: 4,050
    edited March 2009

    Maybe we need a topic similar to the "Not Diagnosed But Worried"--it's essentially the same thing. Those of us with cancer holding hands for those praying they don't get diagnosed with cancer. Maybe call it "No Mets Yet But Worried"--? I dunno.

    We're all hear to help each other.

    If it helps our mets sisters to not seek their support when we're scared of mets--and who isn't--then where do we go to ask appropriate questions about mets work ups, etc? Do we make that topic taboo?

    I think there needs to be balance AND sensitivity. It's hard to make mets the "elephant in the room", but I surely don't want our sisters to feel uncomfortable or feel they need to babysit us when we're scared.

    Anne

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  • otter
    otter Member Posts: 6,099
    edited March 2009

    MOTC, I agree with you that there needs to be somewhere else for women to discuss their concerns about mets before they're actually dealing with them. 

    It's just not appropriate for us to go to the one-and-only mets forum and ask the women there to reassure us that our scans will be clean and we won't be joining them.  I also worry when someone with early stage BC posts on the mets board that she declined a particular treatment--like zometa--because the risk of SE's was greater than the benefit.  Heck, that same treatment might be the only thing available to the metster who asked the question.

    We only have that one forum for everything dealing with mets, but it's also the only forum designated for "recurrence".  And, a "recurrence" doesn't have to mean mets--it could be local, in the original breast or the axillary nodes.  That's quite a bit different than mets to bone, liver, lung, etc.

    I don't think we should be starting threads on the "Moving Beyond Cancer" forum to discuss our fears of mets or our tumor markers or upcoming scans.  But, I know some of us are hesitant to talk about those issues on the "Not Diagnosed But Worried" or "Waiting for Test Results" forums, which are where the rookies hang out.

    So, I agree there is a gap in the topics available on these boards.  I don't think we have a good solution.

    otter 

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  • badboob67
    badboob67 Member Posts: 2,780
    edited March 2009

    I surely don't know the answer, but can tell you posts like the ones that sort of "set off" several of our metsters this week don't happen often.  I'm not sure another section or any amount of polite redirection will help in some cases. Some people just sort of miss things that seem like common sense to others.  From what I've seen, most "is this mets" questions are coming from someone with a specific concern and most of us do not object to that.  I think the off-the-wall sort of comments and questions are inevitable.

    I have wondered, though, if "recurrence" really belonged with mets because a recurrence is not necessarily stage IV and I am sure someone with a recurrence that is not mets needs a different type of support than what we metsters are able to provide.

    I am thankful that you all are concerned about this and sensitive to our feelings!

    (((HUGS)))
    Diane

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2009

    Member ~ I wonder if the concerns recently expressed on the mets board should possibly be brought to the attention of the moderators.  It's something I never realized until I read that thread, and I'll bet many others aren't aware of it either -- although I totally get it after reading their comments.  

    For those of us who have been on here for awhile, we can pass the word, as you're doing here.  But it's not uncommon for someone new to the boards to post in the mets section when their concern is about mets.  So I'm wondering if a new forum for Questions about Recurrences & Metastasis would help.  That way, anyone who wants to add their knowledge (as Anne pointed out can be extremely helpful) can, and those who don't can ignore that section. Just some thoughts about it...    Deanna

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited March 2009

    I'm becoming an old timer here (Yay!) and I remember when the Moving On section was primarily for posts like these -- women expressing their fears, when to go to the onc and when not to, that sort of thing.  Then it somehow morphed into insane political fights and chit chat about TV shows.  I have no problem with chit chat or even insane political fights, but there was a time when breast cancer was most of what was discussed here and thats what I was thinking of when I made the suggestion.

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  • sam52
    sam52 Member Posts: 950
    edited March 2009

    I agree that it is inappropriate and insensitive to talk about our fears of mets to people already dx with mets.Their issues are really different and they should not be put in the position of reassuring others when they are worried.

    We really need an additiional section, along the lines mentioned by some of you already.

    We need to ask the moderators if they can start one for us

    Sam

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

    Personally, though my journey has been short so far, I find that I already avoid the "is this ......? " threads. I see the answers over and over are all the same "hang in there", "80% are benign", "go to your doctor", etc. I don't have the energy. Also the ones asking "bi or uni?" We know what kind of tension those ones cause. I check out the Active Topics and sometimes catch myself in the wrong Forum category (like Alternative!).

    I now keep to a very small group of threads that keep me posted on the people I have learned to care about. I try not to lurk where I don't belong so I don't stress myself out, but there are questions that arise and there is usually already an answer here! There are also personal stories that make my heart ache and I don't know how to respond. I check for people needing prayers and add them to mine even if I don't know them. 

    I have lived on this site since just before diagnosis (no, I never asked "is this...?") and would be devasted if I was restricted on it. I have it up at work all the time and it's the first site I check at home. I tell my husband I need to see how my ladies are doing....

    Many of us will become metsters. I have read the threads and feel way more prepared than I would have months ago. I now know it is not an immediate death sentence and there is hope from the pain. I know what tests to ask for and when. I even asked my doctor for a bone scan when he didn't provide one because of what I've read here.  I am grateful for every post I chose to read. Thank you.

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  • BethNY
    BethNY Member Posts: 2,710
    edited March 2009

    I wasn't going to chime in here... but oh well.

    I was dx 5 years ago. It was very rare that I would ever go on the mets forum, and I would never, ever go on the palliative forum... Why would you want to read things that have nothing to do with where you are at in your journey???

    BUT, many of my friends (like real friends that I actually talk to and hang out with outside of BCO) have mets. So, the only way I can keep up with most of them, is by popping into the mets forum from TIME TO TIME to just check out people's posts. I rarely reply, unless its someone talking about crappy scan results, or great scan results, and of course as a friend I want to share my thoughts with them.

    I don't understand how people lack common sense, and go post in the mets section in CAPITOL LETTERS WITH FIFTY !!!!!!!!!!!!! following their posts, and write a plea like their life is over, and they HAVE NOT YET EVEN BEEN DX with mets! Then, they get the all better from their doctor, and just leave these women who spent the last week helping them in the drop of a hat.

    Even though moving beyond has turned into some lighthearted conversations, this is ABSOLUTELY the place to discuss your fears. If you are diagnosed with a new primary cancer that is not mets there is also a forum for that too!!!

    And Barbe I do respect you tons, but honestly, Many of us WILL NOT become metsters, and reading their posts CAN NEVER prepare you for what a mets dx feels like. Just keep that in mind.

    It really hurts me that I see my friends with mets feeling like their place on this board is not sacred anymore. I know how I would feel when from time to time someone in their 50's would post in the under 40 section, comparing their BC to those of us who were in our 20's....

    With 50 forums on this board, there is a place for everyone. I'm sure the metsters aren't trying to chase anyone out of their space (cause seriously girls, if you won't post anywhere else, how can we keep tabs on those of us that we love and care about so deeply) but lets' just be respectful of what we're writing where....

    love to all

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  • GramE
    GramE Member Posts: 5,056
    edited March 2009

    I am one of the oldsters and the moderators have added an "older Women" forum.  It has tons of postings and several different threads off of it.   I would not be upset if someone who is not older posted, like asking for a mom or sis or grandma.  As in person, there are ways to gently ignore or offer support.   Some days I do not want the word cancer mentioned, but when I look in the mirror at my 6 inch scar, at my inch long hair, it is hard not to be thinking of it.   

    Since there are so many different aspects of this disease, stage, grade, even all the kinds of surgeries,  I think a referral to another thread could be more helpful than criticizing a person for her thoughts.   Just my opinion.    

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

    Oh Beth, now I feel bad. The members list is 47,872 (I know some are angels now) and even if 1/2 of 1% got mets, that would be 240 metsters and that, to me, is a lot!

    I'm sorry if I was a downer on my post....

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited March 2009

    I think we have to remember that having mets is different.  It is a very isolating, scary journey and those women absolutely need their own safe space to support each other.  I have recently gone on the lymphedema section with some "is this LE?" posts and I think that is very, very different than going in the mets section with an "is this mets?" question.  It makes me angry, frankly, that there are early stagers still posting on the mets section expressing resentment that they can't go there to be reassured.  It should be enough that the women with mets say these posts cause them pain.  Thats enough.  If they say thats the case, don't do it.  Don't cause them more pain.  Let them make that call and don't argue.  Common sense, ladies.

    I go to the mets section because there are women there I started out with like Kimmytoo and Janis and I am rooting for them.  I also feel some responsibility to chime in on some of these "please tell me I don't have mets" posts.  I may have stirred up this current boo-ha-ha by doing this but I am not concerned.  I think it has been very healthy for the early stagers to hear how the women with mets feel.  And they shouldn't have to police us.  Lets police each other. 

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  • Marple
    Marple Member Posts: 19,143
    edited March 2009
    When I first came on to the boards I found it very confusing (not too swift here;)) so I'm sure I inadvertantly posted questions on the mets boards that I shouldn't have but didn't know any better.  I'd just be on Active Topics and would post.  I'm sure some newbies may have found themselves in the same boat? Embarassed Maybe not, just a thought. 
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  • Diana_B
    Diana_B Member Posts: 287
    edited March 2009

    I can certainly understand why the metsters were upset.

    I also wanted to say, though, that as someone with recurrence (regional) I don't really know where to go on this site. In my experience, being re-diagnosed is very different from being diagnosed originally. And I imagine being told you're stage 4 is different from what I'm going through too, so I find it awkward posting there.

    Then when I go to the hormonal section, for example, I feel upset because I feel the women there who mostly haven't experienced recurrence have more choices than I do.There's also a lot of discussion of taking AIs for five years, which distresses me because I'll be on these things for life. I'm not saying they shouldn't discuss these things, but just that the recurrence perspective on them is different.

    I find having a recurrence is an intensely isolating and strange betwixt and between experience - I can barely find the words to express it.  Maybe having a separate recurrence section would be a good idea.

    But will we then end up with too many sections? Are there any others out there with recurrence who have any thoughts on this?

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