Forum for breast issues not related to BC?

NancyHB · April 2014

So many women (and men, I'm certain), begin their journey here when they find something suspicious, either on their own through BSE, an unusual mamm or U/S, or changes in their breasts. Over the last several weeks I've been reading so many of these stories in Not DX but Worried forum, and the Waiting for Test Results forum. Even when some are given good new - no BC! - they are often given other news - fibrocystic breast issues, multiple cysts, etc., - things that aren't cancer and may not even put them at high risk for cancer. Yet they still need support...and they continue to find themselves here, in our forums, looking for answers that we cannot provide (and potentially worrying themselves because, well, afterall, this IS supposed to be a BC forum). Would it be possible to start another forum for non-BC related issues - a place where these women can continue to communicate and share information, while they're maybe on "wait and watch" for cysts or lymph nodes or other non-cancer but still concerning issues? Or does that change the intent of BCO? I ask because I feel (and please, someone correct me if I'm wrong) that there are more posters than usual that are not dx'd and probably never will be, but continue to be here, seeking answers and support when many of us are trying to deal with our own cancer issues.

I'd be interested to hear others' thoughts on this.

Nancy

Beesie · April 2014

Do you mean starting a new forum for benign conditions on this discussion board?

Or you do mean starting another discussion board on this website, one that is separate from this board and is specifically women who are dealing with common benign conditions?

I think the former wouldn't change anything from how it is now, since it would keep women with benign conditions on a breast cancer discussion board, and even encourage them more to stay here. However I think the latter would be a good idea but it would be a very big undertaking and it could be confusing for women to understand which board to post on.

NancyHB · April 2014

I agree with you on all points, Beesie - I was hoping for a kind, gentle, loving solution, but I don't know if one exists. It is wonderful to have supportive women on these boards who have "been there done that" with the fear and anxiety related to the waiting and testing process, and they are often helpful to those who come after, worried and afraid and without a diagnosis...

But it is also a struggle for me, sometimes, when I want to provide support from my perspective, only to find a thread full of those whose dx is not BC-related but "breast" related. Sometimes, I wonder if it's what it would feel like if a bunch of us early-stagers went to the Stage IV forum to talk about aches and pains that cannot begin to compare to fighting for your life...?

For example, the IBC forum, for those, "Just diagnosed, in treatment, or finished treatment for IBC" is filled with posts asking "Is this IBC? Could it be?" often with graphic pictures ("Posting
pictures of symptoms is NOT recommended -- you are encouraged to seek
medical advice from your doctor in the event of any concerns.") Isn't that what the "Not Dx but Worried" forum should be for?

I don't know - I'm sorry, I guess I caught myself on a bad day. It just seems there are an abundance of posters without a dx, not high risk, but continuing to feed their anxiety and fear (and perhaps others?) by hanging around. And, selfishly, sometimes it makes me a little sad - I wish I didn't have to be here, that I could just walk away.

And I worry that as this continues to grow, we become less a supportive breast cancer group, and more a "breast" group, if that makes sense. That's why I suggested a new forum for those with breast issues and concerns...so they can move away from the dx-specific forums.

Beesie · April 2014

Nancy, I’ve seen the problem that you mention
about IBC and honestly, I don’t know how the women with IBC stand it. Every woman who has a rash or pimple on her
breast posts there, all in a panic because she thinks she has IBC. Personally, I think all those posts should be
moved by the Moderators to the “Not Diagnosed But Worried” forum.

I think what BC.org needs to do is make it
clearer that there is a section for those who are “Not Diagnosed but Concerned”, and that this is where ‘not diagnosed’
women should be posting ALL their questions. It does seem that lately more than the usual
number are posting in the ‘diagnosed’ forums. To that end, I’d recommend that
the “Tests, Treatments & Side
Effects” section be renamed “Diagnosed
with Breast Cancer” so that it’s much more clear that these forums are for
women who have been diagnosed with breast cancer.

Separate from the issue of ‘not diagnosed’
women posting in the diagnosed forums, I’ve noticed that many women who have
been diagnosed are asking questions about post-diagnosis tests in the “Waiting
for Test Results” forum in the ‘Not Diagnosed’ section of the board. Maybe there needs to be a “Tests After
Diagnosis” forum in the ‘diagnosed’ section of the board. I’ve also noticed that
more and more women who’ve had BC in the past are coming back and posting in
the ‘Not Diagnosed’ forums with concerns about what may be a recurrence or a
new primary or even mets.This board has
lots of threads about recurrence and mets concerns; perhaps these should be put
into a separate section that is clearly designated as being for those “Previously Diagnosed with Breast Cancer”.

When women post in forums not designated
for their type of concern, the answers they get often don’t apply to their
situation, and could be misleading or worrisome. ‘Not Diagnosed’ women asking
about their upcoming lumpectomy (or more correctly, excisional biopsy) in the
Surgery forum are warned about SNB pain and told to get their ER/PR and HER2
results and an Oncotype test.None of
that’s relevant to someone not yet diagnosed. Similarly, the advice about new breast concerns that’s given to a woman
with a history of breast cancer probably should be different than the advice given
to someone who has never had breast cancer.

I think that some reformatting and clearer
section titles would go a long way. That
said, I don’t think that those who have common harmless breast concerns and who are
average risk should be encouraged to hang around a breast cancer discussion
board. I understand why women who are high risk often
stay on this board to get support and share their experiences with other high
risk women. Women who are high risk are
among our most valuable members, particularly when it comes to offering advice
to the ‘not diagnosed’ about when to do something immediately vs. giving
something more time, what tests might be appropriate, what different test results
mean and what the appropriate follow-up might be, etc.. Many of the high risk women have been through
more testing and biopsies and false positives than most of the women here who
have been diagnosed. Many have had surgeries and are on hormone therapy. So they have a
wealth of information to share.

But being high risk is different than just
worrying about one’s breasts. So when it
comes to women who have been found to have conditions that are common and not high
risk, personally I worry when they stay here after they get their test results
and a bit of advice about how to deal with their condition, if it’s something
on-going, such as having painful fibrocystic breasts. 60% of women have fibrocystic breasts. 50% of women develop benign
calcifications. About 75% of
pre-menopausal women have dense breasts. Cysts and fibroadenomas and nipple discharge are very common. If someone comes here with a concern that is
found to be one of these common benign conditions – a condition that does not
increase their risk to develop breast cancer (or not more than by just a
nominal amount) – then I think sticking around here is the worst thing that
they can do. Reading
about breast cancer all the time, thinking about breast cancer all the time, comparing
their 'symptoms’ to the symptoms of women who have been diagnosed – it just reinforces their
fears. And suddenly you start seeing
women who are average risk saying that they can’t deal with the stress and they
are contemplating having a PBMX. They
are urged on by other women who are also not high risk but who have similar
benign conditions and share the same fears. So I wouldn’t be in favor of starting a new
section or forums for women who have normal benign conditions – at least not on
this discussion board.

NancyHB · April 2014

Beesie - as always, you're the voice of reason. I like your ideas of making forum titles more descriptive. It might be helpful as more and more women (and men, too - I never want to forget our brothers in this disease!) come here looking for answers to their questions.

On that note - you touched upon another concern I have about non-dx'd women staying around after receiving positive news (positive in that they do not have BC; perhaps not-so-positive that they are dealing with fibrocystic breasts or other issues) and counseling those who come after them. I do not like to be exclusive in general, but I can't quite figure out how to encourage some of these women to move on (it's hard enough to do it myself!). There are times when BCO feels less like a support system, and more like a chat group for those who have had a scare and may be dealing with "breast issues" rather than "breast cancer."

So, I'm all for cleaning up the forum titles. Mods - what do you think?

Moderators · April 2014

NancyHB and Beesie, thanks for your thoughts on this! The team is considering your ideas, and looking forward to reading other members' views.

• The Mods

MelissaDallas · April 2014

I vote no. It encourages all the women who are convinced there is something wrong with them when, in fact, there is not, to continue to hang around, plus it just encourages an association between fibrocystic breasts and cancer when there shouldn't be.

NancyHB · April 2014

I agree with you, Melissa. I would prefer that those with "breast issues" move on. But they aren't, and I doubt that they will. There are a couple of members who aren't even diagnosed, but post in the forums as if they are (that may be a whole 'nother story...). "Diagnosis" lines include information about surgeries and treatments that aren't related to cancer. Many women openly admit they plan to stay around to be supportive of others who are having the same experiences. They are here; they plan to stay here. And while I would prefer that they not be (maybe this is why a friend of mine once called me a "cancer snob"), unless we actively encourage (or push?) them to leave, they won't. If they're going to here, I prefer there is a safe place for them to discuss their concerns, instead of being on the boards for those WITH breast cancer, or high risk of breast cancer, "skewing" the realities of what this disease is (and isn't). Having fibrocystic breasts doesn't make you higher risk; yes, I'm sure it's painful and unrelenting and horrible and awful, but it isn't and won't become BC. Eczema may look like an IBC rash, but it's not and never will be. An inflammed lymph node doesn't always need to be biopsied - in fact, it likely means it's doing it's job of catching an infection somewhere in your body and helping you get better! I'm sorry - I'm being snobby, and unloving, and I don't mean to be, but it has become a source of frustration for me as I am in the middle of testing for a recurrence and I want to come to my safe place here, for support, and I don't know, something's change lately. Maybe it's just that I've changed. I want to leave the sandbox and go home with my toys and never have had to come here in the first place, but I can't.

I am a strong supporter of moderation intervention at certain points in the process; yes, this is the internet and it's open to the public and free, but that doesn't mean everyone automatically gets a red Solo cup and an invitation to the party. I've suggested moderating newbies for at least a couple of posts to help cut down on the amount of spam; somehow something is working because that's gotten better. Maybe it would be helpful for moderators to post gentle reminders that this is a Breast. Cancer. Forum. I know mods have a tough job as it is; they do a great job of moving posts around to appropriate forums when necessary, and for that I am so very grateful. Are there "back-up" moderators, maybe long-time posters or respected members who can help carry the burden of moderation at certain points and places - not as themselves, but as moderators?

Thanks for the feedback, Melissa, and I'm sorry for the early morning, coffee-less rant. I guess I'm a little more scared than I thought I was, and this must be how I express it. :-) Thanks to everyone who works behind the scenes here at BCO; you have held my hand during the scariest moments of my life, and continue to be here when I need you. Thank you.

MelissaDallas · April 2014

Oh Nancy, I agree with a lot of what you say. That is not a rant.

I just see so many threads where I think the "support" some of these women are getting is more encouraging unnecessary anxiety and unnecessary treatment than helpful. I see them goading and pushing to seek tests and surgeries that they don't need and can't afford. I see them creating a sense of urgency when there is none to the point they are telling them to go out of network so they can be seen tomorrow instead of in two weeks because, after all, if it hurts there really must be something wrong with them. I think a lot of these women are getting bad advice instead of support. I also don't think it is helpful to, for lack of a better term, indulge someone who clearly has an anxiety disorder and hypochondria instead of a medical issue to a thread that goes on to pages and pages. I really find that unkind in the greater scheme. I see certain people tell virtually every poster to ask for anxiety meds for something that, in the grand scheme of things, should just be a small bump in the road of life. I could go on and on.

Oncearunneralwaysarunner · April 2014

thank you NancyHB for starting this tread. Ladies, you have expressed some of the feelings I've had regarding certain posts in ways that are significantly more eloquent and compassionate than I could do. I agree with the majority of what was posted so far. I'll admit that I have been frustrated by certain posts by non diagnosed individuals as I found them to be disrespectful (maybe this isn't the best word here but it's the best one I have right now) to those of us who are dealing with our own diagnosis and treatments. I don't want to diminish what someone is feeling regardless of where they are on this journey, however I feel that some non diagnosed members forget that we are dealing with our own issues and concers. Moderators, I would be happy to elaborate on this in private.

I like the idea of updating the titles of the forums for clarity. I would also like to suggest something similar to what has been done for the Stage IV forum, where it is clearly indicated that if you are not Stage IV you are not to post there. Perhaps it's time to remind members that certain forums are only for those diagnosed. I can only speak for myself, but I'm not upset about the Stage IV notice, in fact I respect it. I would also respect such a notice for diagnosed boards if I was not diagnosed.

Just some early morning thoughts while the coffee is kicking in!

Tomboy · May 2014

I just found this topic, because i thought i would go and see if i could answer questions for some one waiting for test results, and it's true. there are women just hanging around "giving support" when they have been tested themselves, and just have benign conditions, themselves. But it does sound like they have educated themselves by reading posts here and there, on bco. it kind of creeped me out. like they are breast cancer groupies. I didnt even bother googling anything, until i was actually diagnosed, and even then, i was much too busy, to even think about going online. I am wondering if there is someway of "proving" that we have breast cancer, before we can become a permanent member, without being intrusive or giving out protected health information. like, we have to have a simple form from one of our doctors confirming that we indeed do have breast cancer diagnosis,that can then be faxed into BCO headquarters. Women coming here for questions and answers, can have a "temporary' membership(probationary) where they could post in those places for the undiagnosed. then, there "membership" would lapse, when it was just found to be benign. I don't know why someone would want to hang out here without a diagnosis anyway. I wish i was blissfully unaware of BCO still! I think some of these issues are just growing pains.

NancyHB · May 2014

Kathe,

I just read your posts in another thread, and it made me think of this one, and - well, here you are. :-) I completely understand your concerns about some posters, and I have similar concerns. One of the blessings I have found in these forums is the level of trust I have established with others; they trust me to be honest about my dx, and I trust them by sharing very intimate and personal details about my dx, my treatment, even my life outside of BC (is there life outside of BC? Oh, yeah, there actually IS!) I feel a kinship and sisterhood with so many I have met here, and I appreciate the friendships I have developed with many women.

I admit that I am sometimes frustrated by other posters I feel are intruding upon those areas of intimacy and trust. I am challenged by one poster who is self-diagnosed with BC; there are others who, as you mention, are diagnosed with something beautifully benign but continue to haunt our corridors here out of fear, anxiety, determination to continue to seek "answers" (when they already have them). In my selfish moments, I want them to go away. In my selfish moments, I think I would rather go away, actually - never to have been here in the first place, never to have had cancer; I dream about benign conditions and wish I had met them on this journey, instead of Stupid Cancer.

Tomorrow is my two-year chemoversary. I have been NED for almost 20 months and am 30 months from my initial diagnosis. So why am I still here? My tests are normal, I chose not to take Tamoxifen...why am I here? I wonder sometimes if what I feel for these other non-dx'd women is envy, perhaps jealousy? What I wouldn't give for a benign diagnosis!! I want to shake them and say, "Run as fast as you can away from here - you don't want to be part of this sisterhood!! You don't want to be here!! Go live your life and be happy!!" But I can also appreciate their fear; for some, once there is a cancer scare the fear lingers and eats at you. Maybe that's why I still remain here - cancer-free (AFAIK) yet still scared, still worried, still afraid.

I came here with educational questions before I was diagnosed; I stayed when my dx was confirmed. I can understand women coming here when they find something odd in their breast - my goodness, the Pinkifying of our Octobers has spilled over into the rest of the year and every women is terrified that their breasts are going to kill them! I welcome those who are questioning and searching, and hope upon hope that they get non-cancerous diagnoses. But I agree with you that when they aren't diagnosed, it's time to move on. As you mentioned, this IS a breast cancer forum. It is primarily intended for those who have an actual diagnosis (and not a self-diagnosis - I'm sorry but that feels so disrespectful to me...but that's another story....) or those who are waiting for test results. Some come here to ask questions, and then move along. But hanging around here because you have issues with your breasts downplays (is that the right word?) the experience we have. And I look to the Mods to step up and protect those of us with a diagnosis from the lookie-loos and "groupies" (I kinda like that word, Kathe - thanks!) and keep this a safe place for us to be.

Thanks for your insight and understanding. I hope I haven't become a Cancer Bitch - that's not my intention.

Tomboy · May 2014

Happy chemoversary! i hope that you have a lovely time celebrating your health! i was actually just now hoping i wasn't becoming a BC-nazi! not that i have ever seen one, really. I do think these are all valid concerns. i was just going to check that thread's subtitle, and make sure that that was where she was supposed to be posting, and go and apologize, if necessary. but she must have learned all the things she knows, by reading extensivily on BCO. that's like me being concerned about my lungs, and joining a lung cancer survivor's group, to learn. i guess i never would think of it. am i being a little much?

Ozzygirl · June 2014

I have been reading this boards since right after they began waaaay back when. In the old days there were very few "sections" and it was crazy seeing some of the posts in certain areas and yes there were newbies posting on stage iv posts etc. And don't even ask me about some of the crazy pictures that were put up in those days.

But even though that happened, over the years I am truly amazed at what this site has become and although I don't post often I have enjoyed many friendships that started from here and this place was here in my darkest hours even though I didn't post.

Something to remember is that some of these people although they are dealing with benign issues right now may end up becoming one of us - the "diagnosed"

Do I like seeing people that have not been diagnosed post in certain areas? No. I don't like it when someone that is not diagnosed tries to answer questions about cancer specifically for someone that is. But I am not sure how to stop it.

I personally don't see an issue with someone who is not diagnosed providing support to someone who is waiting for answers whether it be to offer words of encouragement or to offer their experience. Do I want to see that same person answering specific questions about a cancer diagnosis - not really but it is hard technologically to restrict this.

There will always be "groupies"....this is true of any public BB forum. No matter what the subject.

There will always be people that will stay on the boards even after getting the all clear because that is how they are. Some are hypochondriacs and some may even do it just for attention. If it irritates you then block the user or ignore the posts.

Then there are those that are pretenders. You see the dating online shows about being caught out pretending to be a guy and its a girl etc. Happens on every site. Just because this is a cancer site does not exempt it from these types of people.

One thing that irritated me about the thread in general was that someone posted a bunch of stuff to the effect of you are not diagnosed and should not be posting anywhere as you don't have cancer and therefore you don't understand yadda yadda and yet that same person felt it was okay to answer questions on another thread about a totally different type of cancer than they had. Somewhat of a double standard. (Bessie this is not directed to you.)

The only way to really restrict access is to do just that...restrict access and if you do that then you defeat the purpose of this site and people being able to find out information and get support. You may have a situation where someone is stage iv but does not want to post themselves but reads and gains insight and support even in lurker mode. You have spouses that would never dream of posting but will look for information on how to help, (mine did for years)

Heck I have been doing it for 12 years on this site from locations all over the world.

Another option would be that you could limit the access to certain areas to a members profile but that also would be cost prohibitive and how would you vet it.? Heck I could go add that I was stage iv to my profile right now and be able to use the correct lingo and you would be none the wiser. I know for a fact that this has happened in the past. There is no way to stop it.

Another thing that came up out of that thread was the whole lumpectomy
issue. Guess what, back in 1989 when I had my first lump removed at the
ripe old age of 19 it was called a lumpectomy and that name had nothing
to do with insurance - that was what they called it back then. You also
have the issue of different things named differently than the US than in
other countries.

The other issue that is somewhat related is this idea of "Scorcarding". See it here all the time. While researching something for a friend who is at the end stage who does not have access to a computer, I have come across posts where someone is flat out called by someone else about what they had in their signature line. That person then had to justify why they had put that information in there.

I have also seen people jump on others about pre cancer not really being cancer. Siggh it has the word cancer in it people. It had nothing to do with the thread in general it was strictly a calling out. Heck I don't care what is in there but I hate seeing people do this. If you are here for support the last thing you should be doing is checking out what people have in their signatures. Heck the standards of staging have changed on this as well over the last few years. Back at my original diagnosis I was stage III but now I think it would be like stage 2 something. Things change.

The Moderators here do a phenomenal job of staying on top of things but they cannot read each and every single post and I am sad to see that some people here think it is their right to dictate who posts where publicly within a post where someone is looking for support.

Nancy great well thought out post and Bessie thanks for all you do.

Sorry for the ramble and back to lurker mode I guess.

Moderators · June 2014

Dear Members,

We have read each post in this forum and we are considering clearer guidelines for making the boards optimal, safe and meaningful for everyone in the community. It is not our intention to restrict usage with the exception of spammers and others who violate the rules of conduct. We do not intend to offer time limits with respect to how long someone can post and be active in the community. However, we are working on establishing clearer guidelines for usage and clearer forums for posting with the goal of enhancing appropriate use of the boards. In the meantime it is our hope that everyone will continue to respond to posts with respect and compassion. When you identify a post that you feel is inappropriate for whatever reason we ask that you PM us so that we can intervene rather than intervening yourselves. Your suggestion for guidelines are welcome. Thank you for your continued interest in improving the boards. The Mods

Forum for breast issues not related to BC?

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