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Information vs. reassurance

I've been a member since 2018 here and in a kidney cancer FB group, which is where I found this. In both groups, I've seen such a wide range of emotional reactions to cancer diagnoses and even just the possibility of cancer before any confirmation, everything from unquestioning acceptance to curiosity to mild nervousness to debilitating anxiety. I thought some members here might find this interesting, or possibly food for thought.

Mods, if you think this would be better in a different spot, feel free to move it.

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,649
    edited February 2022

    I like that graphic! Thanks Alice. I also believe that many of us fall somewhere on the spectrum between the two.

  • alicebastable
    alicebastable Member Posts: 1,934
    edited February 2022

    exbrnxgrl, I thought it might be a good discussion starter - even if the discussion is an internal one in our heads.

  • minustwo
    minustwo Member Posts: 13,002
    edited February 2022

    ALice - that's really good. Thanks

  • moderators
    moderators Posts: 7,691
    edited February 2022

    Here is perfect, Alice! Than you so much for sharing!

    The Mods

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2022

    Excellent, AliceBastable!

    exbrnxgrl, I agree that circumstances might turn an Information-Seeker into a Reassurance-Seeker (or a bit of one, anyway), but ultimately I think that we are one or the other, and that's evident in how we respond to those who offer up information and support. The real challenge, for those on this site who make the effort and take the time to respond to newbies, is how do you appropriately respond to and engage with a Reassurance-Seeker?

    The number of people who respond to newbies has been getting smaller and smaller; at least part of the reason is the challenge in engaging with Reassurance-Seekers, and the fall-out from responding to them. These individuals need support just as much as anyone else, but as many of us have experienced, the responses that come back to us after our posts are often argumentative and may include verbal attacks, even if we've posted the exact same thing that an Information-Seeking finds valuable and appreciates. And of course with a first post, we often don't know if the individual is an Information-Seeker or a Reassurance-Seeker, and we only find out when we get the reaction after we post.

    It's enough of a challenge that I've pretty much given up on all of it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,649
    edited February 2022

    beesie, you hit the nail on the head! Clearly, I'm an information seeker and I know that I sometimes miss the mark with new members who are reassurance seekers. Too often I find what you said about verbal attacks and argumentative responses ensue if you provide facts rather than reassurance to be true.Brings to mind a recent stage IV poster who got mad at most of us when we explained why stage IV members, de novo, don't often have mastectomies. After telling us that that was the stupidest thing she ever heard, she left. She clearly wanted to be reassured that her desire for a mastectomy, that she felt she was being denied, was the correct way to go. Despite trying to help her understand the situation we couldn't reassure her so she left bco. It was strange to me because why would she want us to be less than honest with her and why would she get mad over a situation that none of us control?

  • ratherbesailing
    ratherbesailing Member Posts: 117
    edited February 2022

    Thank you AliceBastable!

    And thank you, Beesie, for once again furthering an insightful conversation!

  • seeq
    seeq Member Posts: 1,060
    edited February 2022

    I love, love, love this graphic. I completely understand the need for a little extra hand-holding - I think we've all been there at some point - but the argumentiveness, aggressiveness, or hostility is outside the scope of what I can deal with. I agree that the reassurance seekers need support, and while I'm not up to the task, I think there are a few members here that do a good job of it. They seem to have the perfect blend of compassion, facts, and encouragement, oh..and patience (I run a little short on that, sometimes). If you've been here very long, you can probably name one or two.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,649
    edited February 2022

    “ I think we've all been there at some point - but the argumentiveness, aggressiveness, or hostility is outside the scope of what I can deal with“

    I'm with you on this! I want new members to be hopeful but there is a reality, not a pretty one, to breast cancer and it's treatments, that we can't control. The reality may not be reassuring but everyone needs to bear in mind that bco members are not responsible for medical reality so why get mad at us?

    Edit: I am going to answer my own question. Due to the ubiquitous pink washing, I believe some new members can’t believe that we are not further down the road with treating bc. I really do think that a lot of folks believe that bc is no longer a big deal. When they’re dx’ed and learn a bit more about bc it could well be shocking and anger inducing to find that bc is still a big deal

  • alicebastable
    alicebastable Member Posts: 1,934
    edited February 2022

    exbrnxgrl, and on the flip side of that are the undiagnosed newbies who go from zero to a thousand on the hysterics scale just at the mammogram stage, convinced they'll be gone before the week's done. And the few (thankfully very few) who seem to WANT to have cancer, even when several doctors have told them otherwise. Those are the ones with issues none of us are qualified to deal with, but they're also the most disturbing for the members who actually have or had cancer.

  • dancemom
    dancemom Member Posts: 404
    edited February 2022

    How about those of us who just talk about ourselves? (Me!) I came here for information, but after seeing how EVERY SINGLE person has a different course of treatment I find myself wanting to hear confirmation of my choices. Its comforting when one hears that others have similar experiences and are doing well. And in answering a couple questions, I use MY experience. I have learned so much by reading various definitions and experiences. (Who knew about De Novo, or oligo...before this???)

    I look to peer reviewed publications for information that i can't digest fully, but here I find information on day to day living that doctors don't go over. That info has been the most important.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2022

    exbrnxgrl, I'm going to mention the other side of that equation. It's when we have people join the Not Diagnosed forum with a concern that is extremely likely to not be cancer, but they aren't willing to accept that the result is likely to be favorable. These are the ones who are already planning for chemo, and worrying about who will raise their children. And it's the family members who are panicked that they will have to see their loved one through a horrible disease and then have to live without them. It's the people who say that they are living their worst nightmare. I'm not talking about situations where someone will be having a 4b or 4c biopsy but situations where there is a call-back for more imaging to take another look at something that sounds, from the description, most likely to be nothing at all. Or it could be someone having 4a biopsy with a description that indicates a small possibility of a tiny area ("single focus") of DCIS. In these situations, the reality is that these individuals probably don't have cancer, and if they do have cancer, the likelihood of a worst-case outcome is small, maybe 1%. Yet if these individuals are Reassurance Seekers, too often the only reassurance they want is to be told that they are right to panic, and that yes, the situation is as horrible as they feel it is. They want their feelings to be supported. Any suggestion otherwise, any facts that show that the situation is not as dire as they fear, is unacceptable.

    I fail miserably in dealing with these individuals, and have always tried to avoid them (but sometimes you don't know until after the first few posts).

    Edited to add: I just saw AliceBastable's post. Great minds think alike!

  • alicebastable
    alicebastable Member Posts: 1,934
    edited February 2022

    Dancemom, I think sharing our experiences falls in a different category - maybe commiseration or bonding? I love that part of this community. But it's also a good way for new members to determine where they fall on the huge cancer spectrum.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,649
    edited February 2022

    Another home run for beesie and Alice too. I agree that even the possibility of having bc is stressful and everyone has valid reactions but the hysteria over a mammo callback coupled with the assumption that they are going to die smacks of a lack of perspective and perhaps knowledge of bc.

    Yes, we do get new members who want to be reassured that panicking and jump to the absolutely worst case scenario is fine and we have members who will be happy to provide that. I would like to see more members, while acknowledging the potential seriousness of the situation, also help new members to develop some reasonable perspective on the situation. The overwhelming number of new members will not die next week, next month or anytime soon.

  • tb90
    tb90 Member Posts: 279
    edited February 2022

    Thanks for starting this thread. So glad these issues can be discussed here instead of overwhelming newbies with your experience. A clue is in the original post. Respond to their need and if it appears to be non productive, gently redirect. For those that are overwhelmed by newbies, please leave for others. Everyone had their own giff to posters and no one needs to extend beyond that.

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022

    This is a fantastic graphic. Thanks for posting. It's easy for me to respond to some people, but there are a lot of others I simply back away from. Either I don't even open the post, or upon reading, I know it's not something I'm skilled at dealing with.

    In fact, we might all know a lot about breast cancer*, but most of us aren't trained as therapists for anxiety. It feels sort of dismissive and disrespectful to tell people that's their main problem, but ... sometimes THAT is their main problem!! And never mind the "shoulds" of it all, I get a little impatient with it.

    *do we all know a lot about breast cancer? I do not. I know a bit about TNBC, with an early stage, and with lumpectomy, not mastectomy. I know a bit about what that's like as a woman in late 50s and into early 60s, with a supportive partner, with good health insurance, and with a high level cancer clinic and health professionals I respect. I have a VERY NARROW view point. It's hard for me to offer much to most new posters here, whatever they are looking for.

    Thanks for the new thread. This is very interesting and rather affirming for me, too.

  • Kikomoon
    Kikomoon Member Posts: 358
    edited February 2022

    interesting graphic for sure. I find it hard to address panicked newbies who are lower stages or likely false alarms, and especially friends and families posting their own fears and panic attacks. I get it, but I just stay out of those discussions. The breast cancer sub-Reddit has a lot of those so I come here instead. I try to stick to Stage IV forums except for the occasional mental health issue, rant/anger threads, and I lurk on the what’s for dinner thread because I like food.

    I think it’s important to share andtalk about how a lot of stage IV are surviving and thriving. I thought when diagnosed stage IV I would be gone in 3 or 4 months, because all I knew was stage IV = bad/ the worst. So once I got on treatment and finally started lurking on the Stage IV forums did I calm down. I was initially scared to even see the posts and now am so glad I joined in. I would say I’m an info seeker but sometimes, I just don’t want to know what I kind of already know, if it’s bad. If that makes sense. I prefer to cry and panic privately then dip my toe in scary stuff till I’m comfortable enough to jump in.


  • alicebastable
    alicebastable Member Posts: 1,934
    edited February 2022

    Kikomoon, that makes perfect sense. I may be matter-of-fact and try to convince new posters to not freak out, and that's my outward self in real life, too. I'll admit I have plenty of inner terror moments in my head even though I had a low stage cancer - but I know that those moments are irrational and I need to keep them to myself.

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022

    Also, I'm not always sure what role "the moderators" (whoever they are) are supposed to play. But I wonder if can't they help more with the newcomers in general, but especially the ones who are most anxious. Again my reasoning, to the extent that members choose to help other members, it is primarily to help with cancer information and basic reassurance and encouragement. We can't treat anxiety and depression.

  • dancemom
    dancemom Member Posts: 404
    edited February 2022

    yes kikomoon! I came here after diagnosis when my cancer center's SW named the organization as a useful resource. I never would have thought to look here pre- cancer. I do think people need to realize that the info on these chats is just people talking from experience and hoping to share helpful info and support. Its not a diagnosis or official advise.

  • minustwo
    minustwo Member Posts: 13,002
    edited February 2022

    I find it weird that new people will spend hours & days searching "Dr Google", but when they get here - they don't take time to read or research what's already here. Like hey - check out the active threads. Then they just want to start one thread after another after another. Back when I joined, it would never have occurred to me to just start out throwing out new threads without reading everything first & figuring out what BCO is all about. I expect that's generational or maybe just my interest in what others have already discovered so we don't have to reinvent the wheel.

    Honestly I found the current chemo threads, surgery threads, radiation threads, etc. very valuable when I was diagnosed & going through active treatment. People in those threads who are truly living something at the same time are amazing support.

    If I find myself feeling really 'snarky' about some poster, I will try to back off & let those with more patience answer. But like Beesie - there are weeks when I feel like giving up trying to help, and I step back & don't check new posts at all.

    Thanks to all of you for your thoughtful contributions to this topic. You are the folks who make this site a success. It's the attitude to 'pay it forward' for all the help & advice we got at one time.

  • dancemom
    dancemom Member Posts: 404
    edited February 2022

    wrenn, I also didn't tell anyone until my mastectomy was scheduled. Then I realized it might be kinda hard to hide 🤣. But different reasons. Mine was because my DH over-reacts and over shares, especially when worried. I only told immediate family. "Somehow" everyone who knows my husband seemed to know the next day🤨

  • seeq
    seeq Member Posts: 1,060
    edited February 2022

    I think it's important to note that it's not only the newbies that are attention seekers. There are some longer-term members that will bring the same problem to the table over and over, and no suggestions or solutions are acceptable. Or, will start multiple threads in different areas, sometimes months apart, with the same question because, again, no one provided an answer or reference that was worthy of their consideration.

    For the most part, I stay in the Stage IV boards. Being dx'd de novo, and on my first-line, non-chemo treatment, I have little useful information for early stages. As such, I (thankfully) have less exposure to the panic of the "uninitiated". Oh, to be uninitiated!

  • alicebastable
    alicebastable Member Posts: 1,934
    edited February 2022

    I think I joined after my lumpectomy, but it might have been shortly before. I kind of sailed through that year looking like it was all a breeze: my Mom dying, losing my teeth, breast cancer diagnosis, lumpectomy, kidney cancer diagnosis, aneurysm diagnosis, re-excision, nephrectomy, and radiation - if it hadn't been for all the deliberate outings, day trips, and long weekend getaways, I'm not sure if I'd have done as well. But it's true what I tell the new people, to schedule fun things to build up good memories for the future. Honestly, the bad stuff that year is really fuzzy. Well, so are some of the good things, but they're a pleasant blur.

    Anyway, I mostly stuck to the Lumpectomy Lounge at first, because when I looked around at other sections, the people seemed more serious, which is not what I needed then. My other health things were scarier at that point, so I kind of came here to escape. I still do. Sometimes when I see a new person getting overly assertive (for lack of a better description) with those who are trying to help, I wonder if I came across like that when I was new, and do a bit of retro-blushing just in case.

  • dancemom
    dancemom Member Posts: 404
    edited February 2022

    whenever you joined, there are definitely more than a few of you who are very compassionate and full of good information and support on all the various threads.

  • tb90
    tb90 Member Posts: 279
    edited February 2022

    I have noted that not all anxiety is approached the same on these boards. Anxiety in the middle of the night is relatable and advice to use Ativan is given freely. What is it really that triggers such strong reactions to others? Is it that they are not yet initiated and deserving? I think that these difficult questions need to be asked and when they cause discomfort, then they can motivate change. Complacency and acceptance of the status quo does not promote the innovation that BCO members strive for in research, treatment and outcomes. It does not take a therapist to respond with compassion and tolerance. Reassurance seekers should come here. We have all needed reassurance. We have all tried to ignore the facts. It might be an addiction or unhealthy relationship. When we feel that our behaviour and choices are so much superior to others, then we need to remove ourselves from the role of helpers. “At least do no harm”. But the key to this is the ability to recognize when your advice is actually harmful

  • alicebastable
    alicebastable Member Posts: 1,934
    edited February 2022

    I feel there's a thick line between reassurance and enabling someone's extreme anxiety. Reassurance can take the form of calmly presenting facts and/or presenting our own experiences. Telling someone who says they're sobbing uncontrollably every night and unable to function during the day that their feelings are completely justified and that it's perfectly normal isn't really helping them. It's possible to commiserate without encouraging mentally destructive behavior.

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022

    What is it really that triggers such strong reactions to others? Others meaning those "reassurance seekers" on the right side of the chart in the original post? Are you asking why are some of us averse to interacting with them?

    For me it's either because a) I don't have any answers to their breast health questions and/or b) by their responses, it's clear no one can adequately answer them.

    "When we feel that our behaviour and choices are so much superior to others, then we need to remove ourselves from the role of helpers."

    Sure, so I'm not sure what you're saying. It sounds like you are scolding people for not helping, and you're also being very judgmental about what our motivations might be. I also don't have a clue about what you think is harmful advice. Maybe you could give examples, so we all know what we're doing wrong.

  • tb90
    tb90 Member Posts: 279
    edited February 2022

    It’s not necessary to decide what is or is not normal for any given situation. Unless you are a therapist. It’s just about compassion and doing what you can without judging. When it becomes destructive is when you exacerbate their anxiety through dismissiveness and intolerance. Perhaps we should create an acceptance questionnaire before being allowed to post. Then others won’t need to be aggravated.

  • tb90
    tb90 Member Posts: 279
    edited February 2022

    Wrenn, you have been attacking me for eight years. I don’t need your approval. I just hope to stop others from feeling attacked. Newbies are consistently reporting feeling attacked. That is all I care to achieve. I am glad this forum allows expression of frustration instead of it spilling over where it impacts them. Please reread those threads where they express their feelings of being judged and attacked. I have expressed myself and am not interested in justifying myself further. I am very confident in my defence of others being hurt. I will continue there and can only hope that eight years of witty attacks becomes monotonous