Stage III versus lower
I wonder whether I will get unkind comments for this, but there is a thing I have noticed a lot lately and it makes me feel uncomfortable. I came to this board because it was a place where I could meet people in a similar situation: those, that were unlucky and did not catch cancer before it has spread to a fair amount of lymph nodes. In the beginning, almost everyone in this forum was stage III as the name indicates.
However, it seems to me that recently a lot of people posting here are really stage I or stage II. And while I congratulate all those that they have been lucky enough to catch cancer early, I would love to have my sheltered place back where I do not see in every post how unlucky I have been. Therefore, I would very much appreciate if those that technically do not belong into this forum could continue to post in the stage I/II forum and leave this very precious board for us who are really stage III. I suppose most of those with stageI/II cancer would also not post in the stage IV board, respecting the special situation of everyone there. Thanks.
Comments
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Well there are many people who have lymph involvement with stage two. Sometimes I will go to a stage four thread to pray for or give encouragement to someone who is down. Never been turned away. I thought people could post in any thread, my bad.
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I agree with D4Hope. Depending on where you read, with 7 positive nodes, I can be staged IIb or IIIa. There's really not that much difference based on the criteria yet the statistics are different.
I think we are all in this together and don't begrudge anyone who has earlier stage disease from posting on appropriate threads.
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I'm an eyelash away from being stage 3 with a 10 cm tumor. My onc is treating me as stage 3 for chemo purposes so I come to Stage 3 boards sometimes to see what treatments are being used and how folks are doing on them. I'm sure there are others in similar situations.
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No one truly has a sheltered place where everyone is like them. We all share a diagnosis of breast cancer, and I think we all can relate. I have a friend who was diagnosed after me with Stage II and she unfortunately passed away. Sometimes the staging thing doesn't make much sense...
I will sometimes post on the Stage IV boards because my DH has brain cancer, and I can relate to some of the topics that come up there (fatigue, disability questions, etc.). But honestly, I do believe that one really should be careful and considerate about posting there. The Stage IV women need their space and they are dealing with very tough issues. Otherwise, we are all in this together. Even though this is a Stage III forum, many of the topics that come up (exercise, nutrition, humor, etc.) apply to us all. So, no, I don't think it's a problem that anyone comes here and posts.
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I dislike the entire "stage". We all put so much emphasis on it when there are more important factors in our prognosis. My onc told me not to worry about being a III - actually never even said the stage but my tumor was around 10 cm and I had 4 nodes that were positive. I don't consider myself any different than the I/II - Although I may have received more therapy. Some of the topics are of interest as others have said.
Karyn
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IMO people should post where they feel the need to post. The only exception, I feel, is the Stage IV section.
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Ok..I'm stage 1 but with triple negative..anyway..I read alot of these threads..no matter what stage or where they are are...but I don't usually post on Stage 3 threads but I creep on them (sorry..that is what my kids say I do on Facebook)...because actually the Stage 3 threads have alot of amazing women on them..and I love how they care about each other..plus how they make me laugh..and sometimes cry....
I dunno...I could say we all have cancer so whatever...but I do know that there may be a difference...but there may not be..I celebrate with whomever posts that they are 5 years out..whether they are stage 0 or stage 4..its still a time for celebration..to me at least.
AgentMo..no unkind remarks...why would anyone do that?
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As one with diagnosed stage III from the beginning, I am comfortable coming here and sharing issues specific to that stage with others here. But AgentMo I think we stage 3 sistas welcome all who come here to share or encourage. I don't think it's whether you're lucky or unlucky. Cancer can start out stage0 and progress to stage 3 or 4 depending on which cells escape to different areas in the body and nodes. I have never experienced other stages coming here to imply we are not as lucky as they are, and I welcome any encouragment they may have or I may be able to share my stage 3 issues with them also. The different forums I don't think are private clubs, We go there to get support and information about this disease. It's a beast this disease and a cruel change to your life no matter what your stage.
Barb -
I tend to look at it this way.....we were all diagnoised with bc. It may or may not come back regardless of stage. I am not much of a believer in statistics only treatment.
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I post on III and IV. I send prayers to the SIV women as those women could be anyone of us. We need our support regardless of the number. Yes, I'm envy the women who can say node negative, 1cm, etc.... but there are women with those stats who are SIV. This disease is a stinker and it S*c%s, big time. I don't be-grudge any women who wants to share the stories, success and failure. Maybe we could start a thread for all stage women offering support?
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I think we all need to support each other no matter what the stage. We all run the risk o the disease returning and that alone makes us all in the same situation and WERE ALL UNLUCKY. Not air to say stage 3 sistas are more unlucky then stage 1-i there is a chance that we can get it back, any chance at all, we are all in the same boat.
Stats ONLY matter i we are on the right side o the stats.
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Hi AgentMo
In my opinion those of us with BC can be encouraging and helpful no matter our *stage*. I do not consider myself lucky that I'm not stage 3, nor do I feel unlucky to be grade 3, Her2+++, with pos lymph nodes and 2 diagnosis in 3 years. I have 3 different breast cancers, I'm being treated, I hope it works, just like we all do.
I have been helped and encouraged by all sorts of women doing different treatments, surgeries, some with successes and some with failures.
Please don't feel the need to isolate yourself to this forum only.
There is much information on the other boards too, and the ladies are so very welcoming.
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I was also so close to being a stage IIIA. (just one node away) My BS actually told me when I asked before surgery that he thought it was highly unlikely I would be a stage IIB. Granted add in HER2+ and the fact that my tumor is very, very fast growing I don't know what this staging really means.
The difference between stage Stage IIA and Stage IIB is the same difference between Stage IIB and Stage IIIA.
I think we all want to help each other out. Seems my chemo regiment is identical to many stage IIIA. We seem to do more rounds if we are HER2+
BTW stage IIIA is considered early Stage. source: http://www.cancer.gov/dictionary/?CdrID=446564
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Titan says: "because actually the Stage 3 threads have alot of amazing women on them..and I love how they care about each other..plus how they make me laugh..and sometimes cry...."
Awwww, how sweet. Us stage 3 sistahs do kinda rock, huh! lol!
I wonder, do the other forums have that "bond" that ours has? I know the stage 4 gals have a close bond. What about the 1-2 forum? I never visit there..only because I usually just hit this forum for updates and then go back to facebook (yes, I'm an addict). I just love our forum BECAUSE we are so close. I do hope other forum are able to have that same bond.
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Bugs to be honest most of the thread I follow are by location, treatment date or type of treatment.
They are in the "Help Me Get Through Treatment" "IDC (Invasive Ductal Carcinoma" "Chemotherapy - Before, During and After" etc. not by stage. I am a true believer that cancer does not know what stage it is. Staging only assists in treatment recommendations. I have seem so many of my stage I cistas become stage IV (with and without nodes) that I don't pay attention to the stats anymore.
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Lago, I'm not talking about stats. I'm talking about a group of women creating a bond with each other and asking of others have the same type of bond. Most of the forums that you listed (other than IDC) are sometimes more temporary because when active treatment is over, most people "wander away" from those forums. Although I remember alot of my chemo sisters, I don't hang over in the chemo forum anymore.
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I'm very careful to not post on a thread that has nothing to do with my treatment, but otherwise we all have cancer. I've been on long enough to see a stage 0 die as a stage IV. Staging is strictly for treament purposes, nothing else. It doesn't mean you are closer to death than a stage 0. It just means you get everything thrown at you for treatment.
In fact, there has been many articles in the news lately that the recurrences are coming more frequently from the stage I and IIs because they aren't treated as aggressively! How sad is that?
I think if something is so private that it actually bothers you to know it is read by others, then perhaps it should be communicated through a PM (private message). This is a public forum and we are all in the same boat.
This conversation normally comes up on the stage IV thread so I'm pretty surprised to see it on stage III.....
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Bugs you are missing my point. Within stage IIB there are so many different diagnosis. I find more with smaller tumors and lymph node involvement and get a different treatment then me. This is why bonding by stage doesn't make sense for me… actually I find I have more in common with Stage IIIA than I do with Stage IIA when discussing treatment.
Most of the stage lines are not that solid when you look at it except for stage 0 or IV. I just don't understand why I should stay in my Stage II corner based on what I have mentioned.
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Lago says: "Most of the stage lines are not that solid when you look at it except for stage 0 or IV. I just don't understand why I should stay in my Stage II corner based on what I have mentioned."
Sigh..the written word is so hard to get across sometimes. Regardless of what the original poster stated, I was not saying in any way shape or form that you should stay in a particular "corner". I was merely asking if there are bonds formed in other forums that are tight like this one. That is it..that was my only question.
I completely agree that the stage lines are fuzzy and that as a 2b you have more in common with me than a 2a.
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All -
This can be such a sensitive topic. We're all here with the beast and some days our emotions are just hanging by a thread. If a woman reads something that can be perceived as negative (such as this topic) then it can start an avalanche. We've seen it before on the boards. So far the posts have been kind and that is great to see.
AgentMo -
I understand where you are coming from because I've been there myself. This board is so dynamic with new women joining all the time and others falling away as their need for support lessens or they just don't want to talk about it anymore.
My thought is that every now and then a gentle (very gentle!) reminder is good. But I believe the message shouldn't be so much about the specific stage but rather the woman's experience with the topic. Before I post anywhere I always ask myself whether I really understand the situation. I very seldom post outside stage III, ILC or BRCA. When I'm in the ILC topics I have seen situations where a stage I or II has given incorrect information -- and I'm sure it's because she is unaware of the additional concerns and treatments that are out there. Then there are times when I'm confused about the treatment discussion because it's about things like lumpectomies or Oncotype testing. Those were never options for me and I never researched them. Even the rads that are done in stage I are different than mine (based on the conversations I've had with my mom about her rad treatment).
Going through ACT whether stage II or stage III is pretty much the same. Some of us have nasty experiences and some of us can keep working and the SEs are not too harsh. Emotions can be shared across the stages depending on the issue. For example my emotional experience with the fear of not getting enough treatment is pretty much non-existent since I've had so much treatment. I keep that in mind when I'm reading a topic related to that issue.
So what I would ask is that women be kind in how they post and try to keep it within their area of experience. I want the door to be kept open because we can learn and feel better no matter what stage.
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AgentMo, I don't normally read the Stage III forum but your thread popped to the top of the Active List and when I saw the title, I had to peek. And then, when I saw what your wrote, I had to read on. What you said has been said before, more than once. Whenever it's been said, there's been about 10% support - and those of us who do agree with your position tend to be slammed by the 90% who don't agree. I've responded before and still have the bruises to show for it.
In reading the responses I'm surprised to see that so far, no one has responsed positively to what you've said. Given the bruises from my previous responses to threads of this type, I wasn't inclined to respond but I don't want you to feel that you are alone in how you feel, so here I am responding. I know that there are others who agree too, but they are probably too bruised to say anything.
The way I see it, there are lots of forums on this board where all of us can congregrate (Just Diagnosed, Help Me Get Through Treatment, Concerned about Recurrence, Moving Beyond Cancer, etc.). And there are lots of forums where we can pose questions and get answers from anyone, regardless of stage, who's has the same diagnosis (IDC, IBC, HER2+, TN, etc.) or the same treatment (hormonal therapy or surgery or chemo or radiation, etc.) or the same experience (LE, reconstruction, no reconstruction, 2nd diagnosis, depression, etc.). There are also many forums where we can meet with others who share our interests or beliefs, regardless of what stage or diagnosis any of us might be/have (fitness, healthy recipes, humor and games, prayers and inspiration, etc.). The fact is that most of the forums on this board do not divide us by stage.
So, when I see someone posting in a forum that is specific to the stage of her diagnosis, I assume that she is posting there - rather than in any of the many other places that she could post - because she wants to hear from others who are the same stage that she is. Perhaps she wants the comfort of being grouped in with others with a similar diagnosis or perhaps she specifically wants the perspective and advice from those who are the same stage. Even if she is asking about a treatment or experience that I've had, I figure that there are enough women of her stage who've also had this treatment or experience and who are fully capable of answering her questions and offering her support. So I respect that. And I respect the objectives of those who set up the board, who wrote under each of the Stage forums that these are places to "Meet others who are the same Stage as you".
Yes, there sometimes is a fine line between the stages. But just like so much else about breast cancer, I think "stage" plays with your head. We are all told what "stage" we are and I think this affects how we think about our diagnosis, our treatments, our prognosis, how we make our decisions, how we view our futures, etc.. Yes, we all can end up being Stage IV, but how we view that possibility and what we do about it is different depending on the stage that we start off as. All of this doesn't matter to a lot of women - I know this - but the simple fact is that it matters a lot to some women. So out of respect to those women, I think the stage forums should be respected.
And that doesn't even get into the issue of how easily misinformation can inadvertently be passed along when someone who is Stage X advises someone who is a Stage Y.
Okay, blast away.
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I don't actually know what my stage was but it's either a 2 or 3 - I was always too scared to ask so not sure where I belong then
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I also don't know my stage as I was to scared to ask. I can understand the person who posted this thread, but at the same time I can understand all the other perspectives provided here. It appears to be such a slippery slope between stage 2 and stage 3. If someone stage 0 was always given her two cents in the stage lll forum, I can see that being a nuisance.
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The sad part is that some of the women in stage 0 have actually had more treatment than the other stages! So many of those diagnosed with DCIS end up with mastectomies which is pretty traumatic....
Beesie, you didn't say anything to offend, why would anyone blast away? But perhaps the reason no one has "responded positively" is that we don't agree with the poster. You said you agreed, yet you posted here too, so it shows that even you feel the right to post. Everyone's opinions bring something to the conversation even if everyone doesn't agree.
I read the Active Topics page first after my Favourites and that is how I came to this topic. I don't go lurking, searching or, as was said months ago by a stage III "looking for someone worse off than me".
We've all said it in our posts. Cancer has painted us all with the same brush! (and I don't particularily like the colour!!)
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OK felt like I just had to comment. I certainly don't mind someone coming to the stage III thread as long as they are cautious about their opinions. I avoid a lot of the other forums because they are not stage specific and sometimes I hit comments about "catching it early", "lucky statistics", or hurtful remarks that are unintentional about what could have gone wrong. I feel very fortunate to be one of those that barely bumped into stage III, but when I said this to my oncologist he was very abrupt and emphasized I was definitely stage III and proceeded to pull out stats to show. I changed oncologists because right now it is a crap shoot and I am cancer free regardless of stage. That being said I avoid the lower stage threads because they are comforting themselves about not being a higher stage, but that is my choice.
Post away wherever you want, but always be aware of who that post is directed at.
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I really do not like turning this forum into "Elitist" groups. When I joined I had no idea what my stage was or grade. I didn't even know we had any! I read all the groups which I felt I could get information from that my Oncs never seemed to think was important enough to tell me. I found that the ladies in Stage IV had been through so much that I could learn so many things to question my Onc about to get better care because of that group. Well, recently someone on it posted they only wanted Stage IV's in "their" thread. Now another poster wants to make her group elitist. I think we should have a right to learn from "all" groups and respond when we need to and not made to feel we don't belong in them. Unfortunately, I wish I DIDN'T belong to ANY bc group but I was thrown in here whether I want it or not. I don't think a support group of any type was ever meant to make people feel they don't belong. This is NOT a tennis club for rich ladies! It is a group of people searching for answers wherever they can find them and help from any stranger who will take the time to help them without telling them to "go next door, you can't come in my club!"
BTW, I, with hundreds of others in this forum will be taking my time Christmas Day to pray for a miracle for ALL bc patients who "want" our prayers. I think it was started by a caring Stage IV lady and no one is being told "only" Stage IV's can join in the giant prayer group. We don't care if it is for ladies, men or donkeys. Whoever has a need and wants our ladies to pray all at the same time on Christmas morning can have their names included. The list grows each day for requests. Now THAT is what a support group should be about in my opinion. Helping and supporting each other any way we can no matter what our diagnosis is. I don't like someone telling me I don't belong for "any" reason. Sorry ladies but this is not the right way to go about things, in my opinion.
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Beesie,
Extremely well put!!! I could not have expressed it better.
Thank you
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And as someone who has been seeing SherriG's smiling face on the Stage III board since I was diagnosed, I can say that the ability to know that there are others in the same place got me throough a lot.
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Sherri's smiling face and comfort words helped me throughout many bad moments and I hope that she will be here for many days to come.
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AgentMo -I too understand your point of view.I do mix with I and IIers on chemo and rads threads and on a TN thread. Some have mentioned the tight bond between groups, and I certainly think this is an important aspect on the boards. But if everyone can post on every thread how can we ever get to know anyone? At some point we have to respect the purpose of the threads. I would not dream of posting on a reconstruction thread - it has not been part of my BC journey. I do not post on stage I or II threads. And I feel somewhat resentful when a stage I or IIer posts on a stage III thread how grateful they are to be node negative. I also understand that sometimes someone arrives on a thread without knowing what it is.
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