RESPECTING the STAGE threads **RANT**

Laura,

Your post was my first laugh of the day, and I needed it!  Thanks!!!

sue

I find the progression of this discussion to be very interesting.  It's the same thing that I've seen when these discussions have come up before, mostly talking about the Stage IV forum but also more generally.  What I see is that the point made in the initial post gets lost as the door that someone tried to edge closed (leaving just a crack) gets opened wide yet again.

"If you go the board labeled a stage other than your own, PLEASE be respectful, offer support or just show yourself out.  Quietly."

This is a quote from Deb's original post that started this thread.  I don't see Deb saying that others aren't welcome to come to the Stage III forum (or to go to any stage forum other than their own) but I do interpret what she's saying to mean that offering support and hugs is great, but please be respectful and don't say more. I think that makes sense.  However what I see in many of the responses is that people are making a very fine line distinction between "offering advice" and "sharing experiences", with many posts suggesting that it's okay to do more than offer support; it's okay to share experiences.  JMO, but I think that's where the problems start.  I think most people who've been on the board for a while have enough common sense to not offer advice, particularly to those who are a different stage.  But I also see lots of misinformation being spread, and a lot of hurt feelings being caused by those who simply are sharing their experience.  To use an example from lexislove and one that I mentioned earlier, if someone who is Stage III is trying to decide between lumpectomy and mastectomy, someone who is earlier stage might come here, not to offer advice but to share her experience on how she made her decision. The problem is that the factors and considerations that went into her experience are quite different than the factors and considerations that go into the decison for someone who is higher stage.  Just by sharing her experience, someone who is earlier stage might be saying something that is hurtful or upsetting to someone who is later stage. Flipping this around, if someone who is later stage shares her "mastectomy vs. lumpectomy" decision experience with someone who is early stage who is trying to make this decision, the considerations discussed might cause a lot of confusion and consternation for the early stage woman. 

Sharing experiences on how to deal with treatments across different stages can also open a can of worms.  What is an acceptable home remedy for someone early stage (and not on chemo, for example) might not be acceptable to someone who is later stage (and on chemo).  Sharing experiences on how to deal with emotional issues can be even more problematic.  Anyone diagnosed with BC faces a lot of emotional issues, whatever the stage.  But I read so often on this board that some early stagers think they have it "just as bad" as someone who is late stage, and I imagine that might be pretty offensive to some who are later stage.

As a child, I remember my dad explaining to me the meaning of the word "empathy".  If before pressing the "submit" button, everyone applied a good dose of empathy, we wouldn't have any of the problems that we do where people are upset or offended by posts, or where information was passed along that's irrelevant, confusing and concerning.  But empathy is complicated - to be empathetic on issues related to breast cancer, in addition to having an emotional understanding of another person's feelings or problems one also needs to have a good knowledge and understanding of the differences in breast cancer staging, diagnosis and treatment.  How many of us have that?  I know a fair amount about early stage BC but I'm fully aware that my knowledge of later stage cancer treatments is limited at best.  That's why I don't share my experiences in later stage forums, even if I think they may be relevant.  I realize that I might be wrong and that I could end up confusing or upsetting someone.

That's all a long way of saying that I agree with Deb's original post but I don't agree with some of the recent discussion which tries to expand upon the list of acceptable ways to contribute in a forum for a different stage than your own, whether higher stage or lower stage. I know that this is a public forum and we are all allowed to post anyway, but to me, applying common sense and respect goes beyond just "not offering advice".  Just my opinion. 

Deb- I agree Iam changing my name back to debbie LOL

Laura- That was funny

How about and I get this quite often, At least you have 1 boob- Yea, it does a great job just hanging there all by it self all lonely and every thing, gee, I never thougth about it that way! LOL!

Konakat! No matter what, You allways have the sweetest things to say and always put a smile on my face!

debbie

Beesie, I usually agree with all you say, but this time I don't. Someone posting and then being given "cyber hugs" is all very well and good, but I find someone's experience in the same matter very valuable! Let's talk about drains. Someone posts that she thinks hers are draining too much. So we're just supposed to say "oh dear, hope you feel better"?. I don't think so. IMHO, I think when people respond with different experiences it helps the poster figure out if there is something wrong there or not. I have learned so much by cruising all the threads.

I learned my lump after surgery was a seroma. I got it drained.

I learned I needed a bone scan. I got one.

I learned what lymphadema was so when I was sent to a PT appointment I wasn't confused or scared.

I learned how to let people around me help me by letting them know what I needed.

I learned a lot and still learn every day.

There are posts that are very factual. That's nice; a lot of that I've already googled myself. There are posts that are very exacting on what they need "Help! I need advice!" and others that need specifics "Lumpectomy or Mastectomy?". Those kind of posts are asking for experiences and points and feedback. We can all research to our hearts content but then reach a point where we need to hear from someone who has already gone through what we are facing. People aren't giving opinions, just experiences.

I think there is a lot of empathy and sympathy on this board. I don't let isolated incidents skew my feelings about what this board is for - support. I'm sure I've pissed off a number of people as I have so many posts (games, games, games!) but I have learned by doing that. The PM option is a wonderful tool as well. The one thing no one wants is pity, which is why people posting on the stage IV boards are sometimes jumped on, and I don't blame the jumpers.

Common courtesy isn't so commom. Either is common sense.

I hate to say but I am guilty of posting all over the place.  I'm sorry,  it takes time to now the etiquette of the forums.  You see I have never been on a forum or chat room before other than FB. I totally get it now and will be more aware. I'm guilty,  don't use it against me.  When I started coming to these boards I was loosing my pea picking mind, scared, mixed up and confused. I do not want to hurt anyone's feelings or piss anyone off.  God knows I have done my share of saying and doing the wrong thing.

Thanks Koda

Barbe, to your example, if someone in the Stage III forum asks a question about drains, while I have experience in that area, so do lots of other women on this board, including Stage III women.  So I let them answer the question.  Why in the world would my response be needed in the Stage III forum?  On the other hand, if someone who is Stage III asks the same question in the Surgery forum, I'll usually wait to see if they get a response from someone who is the same stage (or closer in stage than me) but if there is no answer within a reasonable time, then I might respond. 

I agree that there are posts that are very exacting on what they need, "Help! I need advice!", or asking about specifics related to "Lumpectomy or Mastectomy?"  But the problem is that even when we are dealing with exactly the same issue, our considerations may be quite different if our stage is different.  The bigger problem is that we might not even realize this.  I can't tell you how many times I've seen women post saying that one of the reasons they chose to have a mastectomy (or a bilateral) was to be able to avoid radiation and hormone therapy.  News flash to all the early stagers:  Women who have nodal involvement will likely require radiation and hormone therapy whether they have a bilateral or not. And being reminded that others are able to avoid these treatments might not be the most sensitive thing.  I agree that many women come here asking about others' experiences, and I agree that sharing experiences is a very important aspect to this board. But this is a big busy board and I have no doubt that if someone who is Stage III asks about experiences with a particular treatment or advice about a decision, there will be many who are Stage III who will offer their advice.  I choose to stick to where I know that my experience and advice is relevant and appropriate.

As for those isolated incidents, I've seem too many of them so they don't seem all that isolated to me.  And with each of those incidents, people are left upset or hurt or confused or frantic (about some treatment that they did or didn't get that someone else didn't or did get).  I've seen too many women leave the board because of those isolated incidents.  That doesn't seem very supportive to me. 

There is empathy on this board, I agree.  Just not enough of it.  

I'll butt out now. This is a hot button issue with me because "Not Respecting the Stage" causes all sorts of concerns and problems on early stage threads too.  But this is the Stage III forum and really, it's not my opinion that counts here.

Well, this is pretty crazy.  My cousin's husband's  wife just called me yesterday to tell me she has Stage 0 DCIS.  I told her I was happy for her, I then realized later what an odd comment that was.  Don't go to a Stage III person if you're wanting comfort for Stage 0, I guess!

I agree it's kind of an unspoken rule!  I have a stage IV friend and she is a rock.  I guess we are all different.  I have had all of the comments and at the time I want to   I have just sadly gotten used to women and men that don't educate themselves on a topic before they speak!

Deleted my response to this because I received a PM frpom a stage 3 "sister" who said my post was inappropriate and made her "cringe" when she read it......I wonder if any of you stage 2 and 2 b ladies received a PM telling you the same thing??........

Well Bug you don't have ot worry about me posting in an inappropriate place anymore....I got the message with your PM.......Sorry I made you "cringe"!.......This is my last post ever on BCO......Just one more person run off I guess.........

Celtic and Hollyann, I agree with you! There is a definite "Sandbox Mentality" going on here. Very clique-ish. Holy crap women! We all have the same disease EXCEPT stage IV as they are defined as terminal!

What does it matter what stage you are for heavens sake! It is used to define you treatment. You don't have "more" cancer because you are a higher stage!

Get a grip women....

Oh and I want to send all my sistas  a big cyber hug

Barb

Holly, since you decided to make my PM public why don't you also say that I wrote that I think your posts are very supportive.

Yes, the key word is respect.  No matter where you are.  Note that I'm not saying the key word is "don't post here".    Yes, let's get a grip and not turn this into a pissing match.

Oh Yea .....wanted to add....that is why I come to this board....because of the whole....THANK GOODNESS NOT IN LYMPH NODES AND SMALL TUMOR THING.....I JUST LOVE ALL OF YOU!!!!!!!!!!!!!!!!!!!!!!!!!

When first diagnosed I did see all the threads on the whole lymph node thing....I thought DANG I AM SOOOOO SCREWED......BY THE WAY.......I LOVE THE RANT....you go girl!!!!!!! 

Oh, PLEASE...

"What does it matter what stage you are for heavens sake! It is used to define you treatment. You don't have "more" cancer because you are a higher stage!".

Really?  So,we're supposed to believe that a woman with DCIS, or with a non-invasive papillary carcinoma, is having the same overall "cancer experience" as someone with inflammatory breast cancer, or someone with a 7-cm IDC and 10 positive nodes, or someone whose 5-cm tumor has invaded the muscle of her chest wall?  The only difference among them is a handful of trivial little details about the treatment they'll be getting?

And then there are all those derogatory comments that have been posted on other threads in reference to this thread.  I think I'll just quote those comments here and let them speak for themsellves.  The subject and posts in this "Respecting the stage" thread have been called "friggin' ridiculous, "a crock of shit," "sandbox mentality," and "clique-ish." The women who have asked posters to respect the unwritten etiquette of the "stage" forums have been told to "grow up" and "get a grip."

Finally, this thread and its contents have actually been cited as one of the "dumbest things someone has said to you" in a post on the Depression & Anxiety forum:  "The dumbest thing happening right now is that there is a post on the stage 3 threads about "respecting the stages". Now the stage 3 girls want to break away and keep us all off. What a crock of shit. This is ridiculous!"

So, I'd like to quote a statement made by the author of all those remarks, and ask that we all think about it even harder than we thought we were: "Common courtesy isn't so common. (N)either is common sense."

otter