Information vs. reassurance

moderators

Hi All, We always step in when alerted. As you probably understand, much is done 1:1 behind the scenes in private messaging. We provide additional resources, suggestions and support, and check in with them until we feel things are satisfactory.

MountainMia, we looked back at our PMs from you and see that we have always responded. If you are not seeing or receiving the responses, please do alert us to that. We are happy to cut and paste our records to you, need be.

However, please feel free to share with us should you not have received a reply, and always feel free to ping if necessary. We too miss things.

laughinggull

Just wanted to say I am shocked that anyone could be offended by Beesies super factual and informative posts. I agree it is likely their cancer reality is what is offensive and they are trying to kill the messenger. I am so thankful for your posts.

exbrnxgrl

laughing gull,

Good point! Yes, some folks are in the throes of being overwhelmed by their dx or the diagnostic process and that can result in shooting the messenger. I’m simply not sure what the best way to respond to those folks is. I know I keep going back to this but it reminds at the member who get upset with those of us who tried to explain why stage IV de novo patients rarely have mastectomies. She became so upset with the fact that we weren’t agreeing with her that she flounced off in anger and asked to be deleted as a member. I realize that that is an extreme example and not common but other than agreeing with the member (who after hearing explanations of why this occurred said it was the stupidest thing she’d ever heard) nothing was going to comfort her. I believe she really wasn’t upset with us so much as with the fact that she had cancer.

sunnidays

I work with people with anxiety issues I don't think people understand what generalized anxiety disorder is, no amount of reassurance is enough because its not about reasusrance.

alicebastable

sunnidays, but this is a breast cancer site and it's not fair to expect members to be able to deal with someone's anxiety. I have plenty of non-breast-cancer health issues, but I don't expect anyone here to tell me how I can manage them. The best we can do is try to help people separate the breast cancer facts from their anxiety, but if they won't accept that, it's not a failing on our part.

beesie.is.out-of-office

Mods, I appreciate that in your post, you state

"Breastcancer.org is committed to providing reliable information, support, and compassion to anyone diagnosed with breast cancer, undergoing treatment, learning how to navigate life after breast cancer, and anyone concerned about their breast health. Our online community is a crucial part of providing much-needed services and comfort to all who join us."

and

"Our values help to create a SAFE space where you can find emotional support, shared experiences, and the wisdom of others facing breast cancer."

and

"The Breastcancer.org community is a safe, welcoming place for everyone impacted by breast cancer. We are committed to helping to improve your breast cancer experience with peer support, education, encouragement, and compassion."

This is a breast cancer / breast health website. Many (although not all) of the concerns that have been raised are specific to individuals who are posting because of "anxiety about breast cancer" rather than breast cancer or breast health issues. These individuals may have come here initially because of a breast cancer/breast health concern, but what keeps them here and keeps them posting is anxiety. Certainly that's what often causes these threads to go off the rails.

It is good to hear that the Moderators do deal with these individuals off-line. I appreciate the sensitivity of these issues and understand why these discussions need to be private. That said, maybe it's because we don't see these behind-the-scenes communications but I admit that it often feels as though the rules aren't applied equally but only apply to established members, especially those few who do the heavy lifting of answering new members's questions. New members can say things that are very inappropriate and upsetting, but if an established member posts something that is usually well received but a particular overly-anxious Reassurance Seeking newbie happens to get offended, the established member gets called out. I've had that happen often enough. Shouldn't respect and consideration be expected of everyone? You say "The language that people choose is also theirs to have. It's the feelings behind the language that is important." Does this apply only to new members or does it apply equally to established members who respond to posts and who are trying their best to offer up support but maybe use the wrong words?

RatherBeSailing and Olma, thank you for answering my question about dealing with breast cancer patients who fall into the Reassurance Seeker category. That's helpful.

wrenn, while most of us are talking here about the issues around undiagnosed newbies, and while most of my posts have focused on these new members, personally I never saw the chart or this thread to be only about these situations. There are also concerns about how to respond to Reassurance Seekers who are here because they do have breast cancer. It's a different issue but there are problems there too. Here's an example. My first diagnosis was DCIS-Mi; for years I stuck mostly to the Not Diagnosed forums and those with DCIS or t1mi & t1a tumors. I remember someone who had a small DCIS; she didn't want a BMX but she felt that she had to have this surgery "to save my life". She firmly believed that without the BMX, she would not live to see her children grow up. She did not understand that this was not a risk that she faced from a small DCIS. She needed the appropriate treatment for her diagnosis, but a BMX simply was not medically necessary. She was very reluctantly having a surgery that she really didn't need. But she was a Reassurance Seeker and I realized that there was no way that I could explain to her why her risk was not what she thought. I made the decision to say nothing, but I felt terrible about it.

LaughingGull, nope, it's my posts that offend. Many Reassurance Seekers don't want to be presented with facts that don't support their beliefs. When I've posted those facts, these individuals feel that I am not taking them seriously, or that I don't understand the issue, or that I am skewing the information to prove them wrong when in fact website XYZ says.... It's unfortunate but this is why, to my DCIS example above, I sometimes opt to say nothing

Good discussion here today.

exbrnxgrl

My head is reeling a bit as there is much food for thought on this thread. I don’t know if I’ll ever be of help to hard core reassurance seekers because when people start catastrophizing or refuse to accept reality, I simply can’t relate. I have tried and I certainly know that some people do this but I freely admit I don’t understand it. I do understand it in children whose framework for life is very limited and I have almost infinite patience for them but I have different expectations of adults. Maybe that makes me a bad, mean, nasty person.
I understand the stress and anxiety that even the possibility of a bc dx brings, but at some point I feel like we should be encouraging folks to deal with the reality of their situation. Emotional ups and downs may still be there but facing it head on and gaining knowledge about one’s situation can be very comforting. I’m not implying that there is a “right” way to do bc but encouraging strength through knowledge as a way to cope might be helpful to some anxious members.

salamandra

I find myself starting to type a response, and then nope-ing out of it, pretty often. I also have times when I just know I don't have it in me to deal with the "not diagnosed but worried" threads. If I do respond, I won't necessarily respond to all of a person's post, but possibly even just to one or two pieces of it where I feel like I can say something that feels right.

Lately I had one post that really really bothered me. It was someone waiting for scanning results, who emphasized that her survival/longevity is very important because she has a child with a disability. Myself being single and without children (not truly by choice), and already feeling like the value of my life and experiences is marginalized in so many settings, including medical, I had a pretty strong emotional reaction.

I started writing and then had to stop myself because my own emotions were too intense. I went back and forth about replying and I finally set it aside for a few hours. When I came back to it, nobody had replied to her at all. I ended up finding a way to say what I wanted to say in a way that I hoped would both be respectful of her experiences and reality and affirm the intrinsic value of our survival, that doesn't depend on caregiving responsibilities.

But I saw later that others had replied and at least one person found my response offensive, and the OP had also felt uncertain about it.

I have not replied again because I don't think further engagement from me would do anybody any good. But it's still on my mind, apparently.

I'm always impressed when I see a poster who acknowledges having a medical anxiety and mentions their coping strategies or the treatment they are getting. But a lot of people don't have that level of self-awareness.

I wonder how difficult of a technical fix it would be to let users customize *which* topics we see in Active Topics. I could definitely see that having emotional benefit. Sometimes I see a "not diagnosed but worried" thread where even just the title feels emotionally provocative to me - 'worried sick' 'on the verge of a breakdown' 'unraveling' etc.

Or maybe some more structured guidance for newbies on that section on how to title their posts so that they are more specific about what is going on with them? Some people seem to know to do this and put enough info that I can have an idea from the title what they're dealing with and how equipped/interested I am in engaging with it, but lots of people use completely generic titles like 'please help' or 'worried.'

I am also always glad when I see women who got benign results come back and engage on those threads. It's really very appropriate for a lot of the heavy lifting of that kind to come from them. I wonder if there's something that could be done behind the scenes to encourage posters who never move from the "not diagnosed" topics to stick around, maybe an opt-out subscription to a weekly digest of those Topics that might remind/invite them share their own experiences where they apply.

Anyway, I also want to say to Typhoon how incredibly touched I was to see my handle on your post. Thank you!

parakeetsrule

I just block all the forums I don't want to see in Active Topics. I can still get to them if I want to through the All Topics page. That's a lot easier than trying to control what title newbies use.

minustwo

I just want to say again that I have sent PMs to the mods a number of times. I always get an answer. I may not always agree with how they handled the problem, but they did answer my PMs.

Relevant to our own health & cancer journey - there are days when I read & answer the active threads and days when I never open anything except the threads I've complied in 'my favorites'. As others have mentioned, sometimes we just have to walk away. So sometimes I don't even open those threads. Other days, I read. Other days I engage.

alicebastable

Salamandra, I'm so happy to see you joining the conversation. There are so many times in a thread started by an undiagnosed or newly diagnosed person, that I hope to see you comment. You have a similar talent to MountainMia in calmly trying to coax the person away from their anxiety without being too sharply direct about it.

beesie.is.out-of-office

Salamandra, I read your post in the thread that you are referring to. I took from your response that the OP's comment had upset you, and I felt that your reply was measured. You then quickly moved on to offering advice about the OP's upcoming biopsy. I thought your post was fine; the OP received a lot of support and seemed to be fine with it.

Your situation didn't involve the Moderators (as far as I know) but it represents a double standard similar to what I was referring to in my previous comment. If a newbie says something that upsets a breast cancer patient here, we are not supposed to say anything. But if anyone says something that upsets a newbie, we get slapped back. I know that sometimes our responses read too harshly - that's something that I wish we were discussing here and something that many of us (including me) need to work on. It's something we can help each other with. But rephrasing and being more cautious and careful in how we say something is different than being told that we just shouldn't say anything at all.

sarahsmilesatme

I’ve been thinking of this post all day. I’d like to add another “thank you” to those who so purposefully, frequently, rapidly, and openly respond to both the information and reassurance seekers. I believe I’ve been on both sides of the chart. I’ve sought information (and reassurance) regarding Oncotype scores, timing for treatments, hair shedding,letrozole side effects, and multiple other topics. I’ve posted thoughts and questions and hoped that someone would respond; and someone did. It made me feel less alone. I find the experiences and the assurances of those on this journey invaluable. “Thank You” to those already mentioned and to many, many more.

SuQu31

I have enjoyed this topic very much and have enjoyed the different perspectives. I did not join the boards until after my surgery, and I don't post often, but I am very thankful for all the people who take the time to respond to questions. I've found most of my answers from other posts, and the wealth of information has been incredible. I found the boards during my “diagnosis, testing and waiting" months, but did not know whether the information was more on the “science" side or the “hysteria" side, so waited until after surgery to really dig in. I was already nervous enough, and I did not want to fuel that fire. I'm so glad it has leaned toward science, common sense and helpful advice from smart, caring women.

Wherever we are and whatever our health care situation, the truth is that our doctors do not have the time to tell us every detail about our cancer and treatment. For those who crave information for its reassurance, being able to read facts from people who clearly know and have lived through this is invaluable. As I healed from surgery, I gobbled up information so that I could fully understand, as best I could, what my future risk was, what lifestyle changes were (and were not) scientifically proven to reduce that risk and ultimately, that I could not fully control the risk and should go live my life.

Thank you to Beesie and others who posted articles and helped me really understand DCIS and that I should continue to look for changes, even after mastectomy, especially given my close margin. (I was not told this). Thank you all also for helping me understand that my breast cancer is specific to me and it is not a “one size, one set of generic statistics" for anyone. Thanks for sending links to articles I can read and understand for myself and apply to my situation.

Thanks to Minus and others who helped me understand and diagnose my lymphedema (yes, it really was lymphedema, as my surgeon ultimately conceded) and push for treatment. Thank you to those who helped me take action for my delayed healing from multiple surgeries and those who suggested bras and work clothes for my new and changing breasts.

Thank you to those on the Stage IV boards I read who help me understand the reality of your lives. Thank you to those, like Alice, who jump in with funny commentary and good advice (your “find some beauty and things to enjoy" during testing and treatment is one thing I wish I had read earlier, but I am applying it to other situations). Thanks to those who write about your lives and challenges outside breast cancer, who helped me feel not so alone while I recovered from surgery and dealt with a dying parent.

Please know that for those of us who read and do not post, your responses are so vital. Some people are irrational. Many are frightened and therefore somewhat irrational, at least temporarily. But the information you post will help so many you never even know about. I understand your frustration with those who seem to “want" their condition to be breast cancer (I mean, what the hell is that?), but agree their issues go beyond the reach of this board. And maybe, someone leaning toward hysteria will see themselves in those posts and realize their own physicians are the people they should trust, not Dr. Google or whoever they are getting advice from.

So, thank you and please keep posting. I'm afraid my only suggestion is to provide information and if it is not accepted, move on. Some minds cannot be changed. If you think someone may just want to argue, just stand by your statement and think of all the other women who will benefit from your generosity in choosing to post.

alicebastable

SarahSmilesatMe and SuQu31, Oh my. I am so touched by what you've written. I think I speak for most of the women who have posted here, that your comments have made us all feel so much better. I was having doubts about the way I respond after a few negative comments and one sharply attacking person here. I really hope the nay-sayers and the moderators see your comments and realize that those of us who keep our feet planted in science and realism are as useful as those who give more emotion-based responses. Thank you.

beesie.is.out-of-office

Sarah and SuQu, thank you for your comments.

"I'm afraid my only suggestion is to provide information and if it is not accepted, move on."

Great suggestion! I know that's something I'm not good at. I've become reasonably adept at avoiding Reassurance Seekers if I identify them in advance, but when I don't and I've already engaged, I tend to feel a responsibility to see it through. I often think, naively or stupidly, that with this one other fact or by positioning something differently, they will understand what I've been saying and it will help them get better clarity about their situation. I also come from a professional background where I spent my entire career using facts and data to bring people around towards achieving a common goal. On my job, I wasn't in a position where I could give up if the first try was unsuccessful. So moving on in these types of situations doesn't come naturally to me. But it is excellent advice and something I will take to heart. Really simple advice but very wise.

betrayal

Great forum with interesting perspectives so enjoyable reading. I agree with SuQu's comments in toto. I will continue to lurk.

sunnidays

This forum is fantastic.

A nurse explained something to me the first time I was diagnosed and it is relevant to this conversation.

After being diagnosed and seeing the nurse practitioner, one minute she would be talking to someone with a Ph.D. in biomedical science the next a person with a learning difficulty, on top of that some people don't want to know all the information about their diagnoses and some want to know everything about their diagnoses.

My point is we don't know the level of understanding posters have of their situation, non do we know their education level or their understanding of statistics and the like or we don't know if they have mental health issues.

I would say it's just one of those things about online forums

.

alicebastable

sunnidays, That's an interesting perspective. But we can only go by what a new person posts; it's not like we can ask if they're smart or not 😃. If they don't want much information, it's usually a family member who asks the questions rather than the patient. If someone exhibits extreme anxiety, most of us (at least the ones posting in this conversation), will try to direct them to getting help for that anxiety. Some will admit it's a problem, others get offended, or other posters will get offended on their behalf. But it's not something any of us should be expected to tackle.

exbrnxgrl

sunnidays,

I have often thought about your point too and it’s definitely the downside to online forums. In the end an online peer support group , while valuable, can’t be all things to all people. I think we try the best we can but we are not professionals in oncology nor psychiatry. We are bound to miss the mark sometimes as we are simply human. Yes, we should strive to be our best in our replies but that doesn’t always happen however bco is still a positive force for those seeking bc support

beesie.is.out-of-office

sunnidays, the other thing we don't know about new posters is anything about their life history. When I first arrived here with an early stage diagnosis, it was something that was easy for me to deal with because of my lifelong history of breast issues (I had my first biopsy at age 16) and because I'd recently gone through a very serious, hugely impactful life event.

But as someone wrote on this site a very long time ago, it's always important to remember that "The worst thing that someone has ever gone through is the worst thing that they've gone through". In other words, if someone has had a wonderfully blessed life, the first time they have a "we just need to take another look at this" callback might be devastating and might change their entire world view.

I do always remember that when I post, but when someone is seeing their situation to be much more dire than it really is, I will sometimes try to offer up some perspective. Often that is well received. Sometimes it's not

What I think is helpful to remember when we respond to posts is that we can't expect reactions and replies that reflect our own experiences and education and mental state but have to be ready for whatever might come back at us, based on the OP's experience, education and mental state. Then we get to decide if and how we deal with it from there.

alicebastable

Wrenn, she sounds a lot like my sister. After I had a lumpectomy, she finally, in her 70s, had her first mammogram. She freaked out about it so much beforehand, and complained so much about it afterwards, that I finally had to tell her to stop talking about it to me because it was upsetting to hear. Of course, she accused me of being unsympathetic and insensitive. Some of the new posters who are having extreme mammophobia over their early testing remind me of her.

minustwo

SarahSmiles and SuQu31: seconding what Alice said. Your posts brought tears to my eyes. Thank you for your feed back.

Sunnidays - I'm going to endeavor to keep your thoughts in mind as I read posts. Level of education and desire to engage in research about BC really does make a difference.

mountainmia

MinusTwo, and maybe that goes back to the question: are you looking for advice and/or information, or are you looking for emotional support? Obviously, not everybody knows that when they post, and of course also it can change even within a post thread. And we can't read their minds! But maybe I'll try to look at posts that way when I consider whether and how I might answer them.

beesie.is.out-of-office

Mods, I just want to say that I really really appreciate some of your recent posts in newbie's threads. I think that's exactly what's needed to set the right tone and to stop problems before they ever have a chance to develop. Thank you!

minustwo

WAY TO GO MODS,. Just saw this answer to one of those anxious people.

>>>Just a mention here that if you are dealing with unremitting anxiety and feeling unsuccessful in resolving it then please also feel free to private message us so we can brainstorm ideas with you. Everyone here has offered great suggestions and there is nothing better than sharing the wisdom of shared experiences, however, when anxiety seems to be greatly interfering with your life, let us know so we can do some resource finding along with you. The Mods

mountainmia

Yes, very good! Thanks to the mods for their added visibility.

alicebastable

Yes, that's great to see that response from the Mods. I hope that degree of visibility will continue. If we've been commenting on a newbie's post, it leaves us confused if the Mods send them a PM and the poster disappears from the conversation and we don't get an explanation.

beesie.is.out-of-office

Today's response from the Mods in the post below was also really helpful, because it directed the newbie well on how to participate on the board, and it set the stage for any of our responses that follow, hopefully in a new thread started by this husband. I've held off responding because I don't want to hijack someone else's thread with issues that may be quite different than those of the OP.

https://community.breastcancer.org/forum/5/topics/882176?page=1#post_5735407

sf-cakes

I've read through this thread with great interest, and then found myself asking my husband, when he brought up an issue last night that he's brought up many times before, "are you seeking information or are you seeking reassurance?" And he said, "oh, reassurance", so I gave him a hug. Thank you, AliceB! The benefits extend beyond this site!