Information vs. reassurance

typhoon

Alice, as a life-long sufferer of Resting B*tch Face (RBF), the "she looked at me funny" analogy really resonates. Basically, the angrier I look, the emptier my brain is; if I look like I'm plotting the mass murder of everyone in my immediate vicinity, it's a certainty that there's virtually no brain wave activity going on at all. RBF has caused more than a few misunderstandings. It's a burden, it really is

AliceBastable

typhoon, I've almost gotten fired in my younger days for my default RBF. Looking through old photos, I had it even in grade school! Now I'm thinking of some of the hyper-anxious new posters who are convinced of the worst just because "I saw the look on the mammographer's face! I just know she saw something horrible!" Good grief, if I'd become a mammographer, they all be terrified.

MountainMia

What a great discussion. Thanks to everyone chiming in.

One question I have is, are there actually many people who leave because they think they've been treated badly? Obviously, any is too many. But people come and go all the time, especially the "not diagnosed but worried." They come, ask questions, get their diagnosis (mostly benign!!) and are never heard from again. Has anyone surveyed them to find out how they evaluate their treatment by us? No? I thought not. So we don't really know, do we, about all the people we supposedly offend by ... whatever our supposedly harmful comments are. I myself have rarely seen comments to a new member that I'd consider disrespectful, and even less often have I seen members state they were leaving because they were treated badly. (Never. Actually, I've never seen that.)

So maybe this is a solution in search of a problem. Maybe this thread is a great way for some of us to consider how we treat others, and do we try to maintain a level of respect that's appropriate for the situation. Other than that, I doubt there is more to be done.

exbrnxgrl

I don't think new members are leaving in droves because they feel they've been treated badly, but I have seen more than a few do that. If someone deletes all of their posts that's a clue that they're unhappy or if they ask the mods to delete their accounts. I have also been bco slapped by the mods for making a comment that they think may have contributed to their leaving (comment was on the controversial topic of spouses using the the collective “we", as in “We are having surgery tomorrow." I know the mods are very eager to make sure that new members don't leave due to our comments., Frankly, I am not sure that there will ever be a solution that makes everyone happy, nor do I expect one!

PS: I agree that the majority of folks who leave bco do so for many other reasons!

Beesie

MountainMia, we somewhat know because people complain to the Moderators. The Moderators then may comment in thread and contact the offenders. I've been contacted a few times over these years. Most recently it was because I didn't take a newbie's concern seriously; if I recall correctly it was one of those situations where factually there was a 99% chance that this individual did not have Stage IV breast cancer and I dared to explain this. In the end I don't think she required anything more than a callback and then all was well.

I know that I am not alone in having been contacted for violations of this sort.

AliceBastable

I've seen a few snit-flouncers, but not many. There's one who reappears until asked if she's been diagnosed yet, then she vanishes again for awhile. She seems to be addicted to breast cancer, without actually having it.

Cowgirl13

This thread has brought up a lot feelings for me and I thought it best if I just 'shut up' (as Will Rogers said 'never miss an opportunity to shut up". But after reading this thread several times, it just hit me. I personally believe that some (not all) of these 'attention seekers' are actually trauma survivors. Trauma affects the brain and trauma can cause PTSD. If you were to see me on the street, you would probably think of thats a normal or regular or whatever person but when I am triggered by something I totally go down the rabbit hole and it takes me a long time to get my equalibrium back. Another thought came to me and that is that you never know when someone is suicidal. So letting it go now. Hope you don't beat me up for saying this. Once you get the hit that someone is going on and on, just don't respond. I've been on this website for coming up on 13 year years and it has meant the world to me. So much help and I've learned so much.

exbrnxgrl

“I know that I am not alone in having been contacted for violations of this sort.”

Yup, that’s what I refer to as BCO slapped!

TB90

Well, the wave is back. The group of ten. Organized, systemic attacks on peers as a group. The fact that you don't see or recognize it is not at all surprising. Imagine, a forum just to attack others with eloquence to disguise meanness. And then a cheering section. Like the mean girls of BCO. That's borrowed from one of my pm's who is afraid to face this group. I will now be destroyed by all of you. And you are much better at it so you win. I warned the moderators that I am having a last post that may cause a stir and may need to be removed. This is not a problem seeking a solution. This is a tragic example of lateral violence. <REMOVED BY MODS> Now I am certain I will be thrown out but at least I turned myself in first. And to all my kind supporters, sorry I am giving up. I have so many people who count on me and I cannot continue where it is hopeless. May something good come from this. May some recognize what is really happening here and break up this group. Be brave enough to stand alone. Group mentality can be very damaging

MinusTwo

xbrn - oh you've hit a sore spot that I know will strike Alice too. It just isn't "OUR" cancer and "WE" aren't going have our body parts cut off. The three of us seem to be trying to make that point over and over, but...

I have found the MODS responsive if I send a private message and ask them to review a thread, but I try not to do that often. After trying to talk sense for awhile, I throw up my hands and walk away - as I suspect many of us do.

Interesting comment about anxiety people 'digging in' and insisting they know what it is and they MUST have cancer. Reminds me of the trend in society that everyone must always win. Think of kids baseball - everyone gets a trophy - no one loses. Or children's B-day parties where everyone gets a present, not just the birthday girl. So how can 'chidren' ever learn that there is always a winner & a loser? And they won't always get everything they want. And they are not always the most important person in the room? Tough luck, too bad so sad... And how do they learn to deal with those emotions!! sorry - rant over.

But I too am concerned about the impression the 'anxiety posters' have on the serious people who come here for information and valid comfort.

Great discussion. Thank you to everyone who is contributing.

TB90 - sorry you were posting as I was writing this, but I really don't understand where you're coming from.

Beesie

Cowgirl, I think that's an interesting perspective and an important point. But it would also be true that some of the people here with breast cancer are also trauma survivors who might be triggered to go down the rabbit hole if they happen to read some of the comments made by these overly-anxious newbies.

Those are the situations that really concern me, when someone who is new is so anxious and upset that she says things that may be devastating to someone with breast cancer. I've been shocked and upset by some of the things I've read, and I'm an early-stage patient without a trauma history. That's the difficulty of these situations. We need to be sensitive to the newbies, but don't we also need to be sensitive to the breast cancer patients? How do we do both?

wrenn

Cowgirl Having PTSD after my child was murdered is one of the reasons it scares me to see anxious people encouraged to stick around on a cancer forum when their issue is psychological. We aren't qualified to treat that and as has been said here by many the members take a lot of time showing compassion to get that point across.

AliceBastable

I've seen comments by some who are undiagnosed that make me think, "Oh, I hope nobody who has a Stage IV diagnosis sees that!" because of the level of insensitivity. Overall, I think it's possible to be supportive but realistic with the new members. If they're exhibiting hysterical language, trying to direct them to someone who can help with the feeling behind that is hardly mean or negative in any way. Some people may not understand that, no more than I can understand someone with a savior complex who thinks their method of conversing with a new, anxious person is the only way.

Harley07

TB90 - Thank you for the courage to stand up. You said it much better than I could have. I do not feel welcome on BCO.

Everyone has a right to their opinion, however, it seems there are some who only want this forum to stand for their point of view. It's really a shame because this forum is a valuable outlet and even though I disagree with some of the views expressed on this thread, they have a right to their opinion and.I have found their input on other topics valuable and helpful.

I could say more, but it’s best I leave it at that.

MinusTwo

Harley - I'm sorry you don't feel welcome. However, I've been reading this thread from the beginning and I really don't see anyone being "attacked". Nor do I see anyone with "an axe to grind". We don't all have to agree and there are no awards given for being right or wrong.

Personally I've found this discussion extremely interesting. And as I consider everyone's views, I'm likely to slightly moderate some of my responses.

Beesie

Harley, what I see in this discussion are a lot of people raising a concern and asking for help in how to deal with the situation.

I know that I don't handle situations with overly-anxious newbies well and I would love advice on what to do. My solution to avoid these situations has been to pretty much stop posting to all newbies (unless they've been previously diagnosed, in which case they are not really a newbie). I can name a lot of others who've made the same decision. The result is that a lot of good experience is gone (not speaking for myself but the others) and these days Information Seeking newbies don't get many answers or information. The other result is that the activity level on the board has dropped to about 1/3 of what it used to be.

That doesn't seem to be the best solution. When I saw I this thread, I thought maybe we could have some good discussion and make some headway on how to resolve this issue, in a way that helps the newbies and those who respond to them.

Clearly you are interpreting this discussion very differently.

Edited for typo only.

Cowgirl13

Beesie, re: 'I know that I don't handle situations with overly-anxious newbies well and I would love advice on what to do'. I say keep doing what you are doing. I'm always amazed at how well you handle thee posts--really. You have a great way of providing the facts, in a way which is very easy to grasp, and I think you are reassuring in your own quiet way. Very much so.

Beesie

Thank you Cowgirl. I think my posts are appreciated by Information Seekers, but by those on the right side column of the chart, no, not so much. My style of responding seems to be highly offensive to some people - I know that from the responses I've received. I always tried to just not post to anyone who appears to be a right-sider, but from a newbie's opening post it's often impossible to know which side of the chart they are on.

Too many bad experiences, for the newbies and for me.

MountainMia

And as for me, personally, I feel like there is a huge undercurrent in this thread that I don't know anything about. I really don't understand what seem to be personal bad feelings between some people. And I am not sure if I'm being included as somehow being an offender. I guess if someone is mad at me, I'd rather have them just say so, really directly, what they think I've done wrong. All this sideways stuff is BS. And I don't mean breast surgeon.

Edited to add, I can delete this whole comment if that seems to be more appropriate. But again, you'll have to let me know.

AliceBastable

MountainMia, Don't delete, please! You're one of the people who has the knack for striking just the right balance in your responses to the new posters. You somehow manage to tell them to calm down without ever sounding like a cranky schoolmarm. I'm beginning to think my resting b!tchface extends to my fingers when I comment and whatever I say comes out much crankier than I (sometimes) intend.

And Beesie, you're so informative that I never see any attitude one way or another, just helpful data.

trinigirl50

I was enjoying this thread, then boom.

TB90, it's not about you.

I am sure all those many people who depend on you will still be depending on you regardless, so no need for the dramatics. No one is out to destroy you, much as you might relish the thought.

I find the women on this thread to be compassionate, patient and helpful. I want to encourage you to keep helping the newbies. I relied on you all, one way or the other, at many different points, times and topics.

Anyway I want to thank Beesie (really helpful when it came to statistics) and quite frankly Alice makes me wet my pants laughing (retro blushing?? that was fxxxxing brilliant hahahahahha). Illmae always a measured perspective. Minus Two, Moth Exbgrl... all of you. Thank you.

I know I am only one of the MANY women who read what you contribute with gratitude.

AliceBastable

trinigirl50, Thank you. THANK YOU. I'm honored that you put me in the group of women I admire, who've been helpful to you and others.

exbrnxgrl

trinigirl,

That was lovely, thanks. Most of us are not medical professionals or therapists. We are just average human beings with breast cancer. Hopefully, the peer support we offer is helpful to many but it would be difficult to be all things to all people. We also come here with our unique personalities, histories and life experiences and that is clear in how we express ourselves. No one intends to make others feel unsafe but we are adults who express ourselves in different ways. Let’s not forget that online communication wipes out many of the cues we get from face to face communication as well.

Personally, I just try to do the best I can. I am human and fallible and I sometimes stumble. Again, none of us are professional counselors. We do the best we can while still dealing with bc ourselves.

Beesie

I've been rereading with fresh eyes and a clear coffee-fueled head.

When I think about it, to MountainMia's comment/question, the number of situations that turn bad are few. The problem is that when one of these threads is in process, it tends to take over the board, at least the Not Diagnosed section of the board. Speaking for myself, because I don't ever want to see someone come here and leave worse off than when they came, these situations really bother me. When I was posting more regularly in the Not Diagnosed forums, and I would get tangled up in these situations, they could also be very hurtful personally - when you take the time to carefully frame an answer and think that you're saying something that will ease someone's mind, it's not pleasant to be verbally attacked for the effort. These days, when I see these situations with some of the current group of regular responders, I feel bad for them. There aren't many of these situations but the few that there are have a big impact on the board and on those who contribute regularly, particularly in the Not Diagnosed forums. These situations are demoralizing, both for the new poster and for the members who respond.

So a question. As was pointed out earlier, we have members of BCO who have breast cancer, and who are also Reassurance Seeking / right-siders on the chart. Personally I can only think of a few that I've run across; I tend to not respond to their posts because I know that I can't offer up a helpful response. Do any of you posting or reading here have experience that you can share, on how you've been able to offer helpful responses to someone with breast cancer who "pursues information definitely" or "asks questions that are unanswerable" or seeks "absolute definitive answers"?

Next, to Harley. I don't want to put you on the spot, so if you choose not to respond, I'll understand. You said "there are some who only want this forum to stand for their point of view". I would like to hear your point of view. I've tossed out my thoughts and ideas but I said that I am looking for a better way to deal with these situations, because I know that I don't do it well. If you have different thoughts and ideas, can you share them? I can't commit that I will agree with everything that you say (for example, to typhoon's post, I do think it's harmful to validate an anxiety that is not based on the reality of the situation) but I'm trying to learn here and I'm open to other's points of view. I can promise that I will be respectful. I can't speak for anyone else here, but I hope that others are also looking for ways to reduce the number of 'off the rails' discussions. And let's face it, having this discussion only among like-minded people who all deal with an issue the same way isn't likely to come up with new/better ways to handle the situation.

trinigirl, thank you.

lenaAZ

I have been reading this thread, and concluded that -- despite having been through chemo, surgery, and radiation -- I am an anxious newbie. I came on here because I am struggling with my next decision, whether or not to try endocrine, which has a clear survival benefit in my case, but I came with a question that probably falls in the "unanswerable" category. So maybe I won't ask what, per this thread, might have been a fake question anyway.

Moreover, I know that I have mental health issues that are supposed to be dealt with by professionals, and that these add a layer to my decison making. All my cancer doctors have known from the beginning that depression and trauma-related issues were part of my profile. I have seen the appropriate professionals. They just haven't been able to help me, and here I am, back on this forum.

So maybe what I really have to face is the 1 in 5 chance that I will have a fatal systemic recurrence of my cancer in the next 5 years. Or 1 in 10 if I accept the endocrine. Nine months since my diagnosis, three treatment modalities behind me, and I still haven't understood how to weigh "chance of early death" with "quality of life," especially based on abstract statistics. I catch myself evading the real issue and slipping away into anger even as I write this.

Whichever I choose, my hope is to learn to minimize the time I spend wallowing in the complicated mess of cancer and treatment (anger, fear, mistrust of doctors, decision paralysis, regret, and so on), and maximize the time I spend on the things I want to live for. And yet this mess is also my life. I had a pretty good month of January, my first without new treatment since my diagnosis, but it was also a month of being in denial. Spending time with friends who have never really understood the reality of my cancer. Pretending to be the person I was before.

Well, the more I write today, the less I know. But I do appreciate this thread. Thanks to you all for your posts.

RatherBeSailing

Beesie, in response to your question...

I have an acquaintance (not on this board) with breast cancer. She believes she is an information seeker. But, in my opinion, she can't really process the information. She ended up searching for doctors who would confirm her often-misguided opinions on treatment, and it was so bad she had two different physicians threaten to drop her as a patient.

I suspect many of the posters fall into this category - they Google and end up with half-baked notions of what is going on, then post for validation: AI's or radiation are certain to give them a heart attack, for example. To me, these are the most difficult to respond to.

I have had less-than-optimal experiences with some of my physicians, and don't necessarily always trust what they tell me. Still, for people without the research skills some of us have, my belief is the best thing we can do is offer support, and maybe a little guidance - but remind them that their providers have the training and clinical experience none of us possess, and encourage them to trust them. Posters will come and go on this board, but the providers are the ones they need to form long term relationships with. I worry about the 1% that may have adverse outcomes, but feel it is the best response for reassurance seekers. Of course, welcome other thoughts...

MountainMia

Thanks, RatherBeSailing. "best thing we can do is offer support, and maybe a little guidance - but remind them that their providers have the training and clinical experience none of us possess, and encourage them to trust them. "

I'd like very specific ideas of what kind of response might be productive. This is one. What are some more?

Also, what to say when a poster states they suffer a lot of health anxiety up front.

wrenn

I think that the majority of those diagnosed with cancer have some anxiety around that. I think this thread was about the odd person who does not have cancer and has been told so by people actually doing the diagnostics in real life but continues to come to ask for reassurance and asks the unanswerable questions. It is not about those diagnosed or waiting to find out if they have cancer and struggle with anxiety.

I think we are sometimes affected by one post and then take the topic in a different direction depending on how that affects you personally but the general theme here is about the odd/rare issue described in the OP.

Anonymous

I agree completely with RatherBeSailing's response. I had similar thoughts in response to the scenario of a Stage IV patient who wants confirmation that mastectomy is what she needs and should have. the key issue there is that she won't get it, unless she finds a surgeon who agrees. None of us here has any power to make that happen. we don't make the rules

I think some aspects of this can be applied to a person who has a fixed idea that they have cancer when they do not. No one will treat them for cancer if no cancer can be diagnosed through existing methods. they do need to take their health anxiety to a professional, although they may not want to hear that.

For the long time posters who respond to these threads, I think it is okay to back away from posting and/or getting entangled in what really amounts to a “trolling" aka attention seeking post that goes nowhere. You can only help people who actually want help. You have to think of your own peace of mind first

typhoon

LenaAZ - the situation you are facing is one that I think all of us have faced: pros and cons of the next step in treatment. If it's of any help at all, I put my treatment decisions/options into two basic categories: steps that were reversible, and steps that were permanent - as in once done, you can't undo the effects. In the permanent category I included mastectomy (can't take that back!), as well as chemo and radiation. I put endocrine therapy in the reversible category; for me it made sense to go ahead with it since I was not a candidate for chemo or radiation, but I could always stop and return to some semblance of "normal" if I had side effects that were debilitating.

It sounds like you have all the BC-specific information you need to make your decision; now it comes down to weighing the pros and cons and taking into account the other conditions you also have to manage. Taking a bit of time to make your decision sounds like a sensible thing to do, and I hope that whatever conclusion you reach brings you peace of mind and heart.