Stage III versus lower

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2010

    The fact that she said she "will not (post) again" does show that she doesn't feel welcome. Otherwise, why would she say that? She felt compelled to post on this one, so why not continue?

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited December 2010

    I completely agree with the OP.  In fact, I think this board isn't handling things very well at all - it's not doing a good enough job dividing us as it can.  I think they need to step up their game.  I am going to propose to the moderators that we have a Stage IIIa, IIIb, IIIc separation, and nobody should be allowed to enter where they don't belong.  Anybody posting "out of stage" should go back to the five posts a day limit.

    In fact, I think we ought to have different forums within those forums too.  Under the Stage IIIa section, we can have an all "woe is me" section, and a "I'm going to get through it with grace and generosity" section.  

    Guess which one the OP would get to post in?

    Lady, get over yourself.  Stage IV women DO have diffferent concerns than all the rest of us.  I had one year of infusions - they have them for life.  They know for a fact they are going to die of cancer - the only thing they don't know is when.  As Stage IIIa, you are hardly much different than a IIb - you may very well die at age 80 screaming "Hey you kids, get offa my lawn!"

    Finally, the division between the stages that we so love to use to divide us on this board - well, some of us have more aggressive cancers at lower stages, some of us are multicentric, some of us have famiiy history - staging is an inexact science.  Check out the women with DCIS or milimeter stage I cancers who end up in the stage IV board if you don't believe me.

    Frankly, Stage III is my favorite board because you women are funny.  (All but one).  You have he best threads.  So, I'll continue to post here as long as I choose to.

    It's very easy to start a forum if you want to.  Go to topix and start your own stage III forum and block anybody who doesn't fit your narrow criteria for suffering.   Until then, as they say, you need to go to STFUniversity.  This is the wild wooly internet and you will never have it your way unless you create your own board.

    Sheesh.

    Oh, and Merry Christmas to you too.  Nice thread!  Lol.

  • Nancy0531
    Nancy0531 Member Posts: 17
    edited December 2010

    Perhaps you could have asked her to clarify her feelings?  Seems to me your grabbed on to one line in her post and used it to make AgentMo out to be a bad person.  Irr493 explained the two reasons, can't they be taken at face value as "nicely, not snide" and left at that?

    (edited to say "her", not "per")

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited December 2010

    You know we have forums for stage1,2, 3 and IV but it's hard to really "stage" people.  I am a stage 1 but I needed aggressive treatment so there are a LOT of us who are generalized by the stardard..."oh you are x, y or z stage" but each of our treatment is individualized.  The first time I came to this group was because someone who was stage 3 was having the same issues that I was having and they were able to help me. 

    I think it just comes to respect....respecting that we each have an opinon :).

    Did I mention that Breast Cancer Sucks??!!!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2010
    Nancy, get over it!!! I never ONCE said that the poster was "bad". That is strictly your interpretation. YOU obviously grabbed onto one line in MY post. Please don't try to interpret my posts. I am one of the most the most forth-coming women on these threads! I tell it like it is! Yell
  • Nancy0531
    Nancy0531 Member Posts: 17
    edited December 2010

    Barbe,  Your post was very short, whereas hers was not.  So, perhaps I did interpret what you meant by "others...think they are the only one's going through this" as a reference to AgentMo, but I would say you did the same in interpreting the other poster's comment.  So, I'm sorry if I was incorrect.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2010

    Thank you Nancy, you will find that you don't have to interpret my posts, just read and enjoy!

  • AgentMo
    AgentMo Member Posts: 72
    edited December 2010

    Sooo, I have read some more responses and I think I should say something after having initiated this discussion.

    It seems to me that many stage III people do at least understand what I am getting at (even though they do not necessarily agree that they are disturbed by the amount of low stage posters) whereas many stage I or stage IIa people don't seem to get it. And that is kind of corroborating my point why I would like this forum to keep its original purpose (meet others who have stage III cancer). 

    I agree that the difference between someone having stage IIb cancer with 3 positive nodes or someone having stage IIIa cancer with 4 positive nodes is not very big. However, there is a huge difference in prognosis and uncertainty between those with no positive nodes and those with 4 or more positive nodes and this is what I would like lower stage people to keep in mind. A lot of stage I and II people may also receive chemo or go through similar treatments but there is still the difference that those with stage I and II in more than 90 % of the cases survive whereas this is so not true of those in stage III. And in my situation it just helps so much more to see people with stage III doing well after all those years than seeing people with stage I doing well after all those years, which after all is so much more likely to begin with.

    I think the real difference between these boards is most likely not so much the physical aspect of treatment but the psychological aspect of how to deal with it. And for this the forums of different stages are helpful. And of course anybody is free to read, it is the posting on higher stage forums that I experience as problematic.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited December 2010

    Just for fun, I ran your stats on cancer lifemath, and came up with this for you:

    35.1% expected 15-year cancer death rate.

    I ran my stats, and came up with this:

    42% expected 15-year cancer death rate.

    Funny, I'm a lower stage than you.

    Your stage IIIa, tiny, 2 cm, grade 2 IDC cancer is waaaaaay worse than my stage II, 4cm main tumor, .5 cm second tumor and 2 mm third tumor, multifocal, multicentric IDC/ILC/DCIS/ADH HER2+ cancer(s).I get it.

    We really can't relate to each other at all, since I did six rounds of chemotherapy and one year of weekly herceptin.  You did, what?  Three rounds of chemo?  Is that what you posted?    I spent an entire year in the infusion room.  I didn't go three times, I didn't go six times.  I went 52 times. 

    We can't relate to each other because I had a mastectomy. Did you?  I was bald for six months.  How long were you bald?

    You make me sad.  We are women with cancer who have undergone horrible and mutilating and life-changing treatments.   Why do you think that "III" means nobody else has anything to offer you?

    You made the point that you don't get comfort from lower stage women's survival since it doesn't relate to you.  Well, I don't think you understand that the staging is only part of the prognostic process.  There are other factors that play into it as well that you are completely ignoring.

    You think only you had the "rollercoaster of emotions", because you had four nodes?   I guess you don't know that invasive cancer can spread through the bloodstream, right?  No place in our stats to put vascular invasion. Some of us had cell debris in our nodes that was unidentifiable so we can't count it.  Maybe it was cancer, maybe it wasn't.  We'll never know.   You know HER2+ is one of the more aggressive forms of breast cancer, right?  In fact, they made a movie about the making of herceptin.  Before herceptin, a stage I tiny HER2+ breast cancer had a more than 50% death rate in five years - did you know that?

    Herceptin has changed that but it doesn't work for everybody and you don't know if you are one of those until you find out it spreads.  Watch the movie Living Proof for more information.

    Frankly, I read back on a few of your posts and maybe it's a cultural difference - I hear the Germans are very rigid so maybe this focus on staging without understanding the other parts involved is an expression of that -   but you mention staging in every single post.  You discuss lashing out at your parents to make yourself feel better which is pretty cruel, as I'm sure they are trying to help you.  You said on one post, "I cannot help but feel totally envious and jealous that they have drawn the good cards and I have drawn the death one."

    So, that leads me to believe that perhaps you don't get good information in Germany.  So, while I find your posts  offensive,   I will help you and tell you that stage III cancer is NOT a death sentence.  I know a lady who was diagnosed stage IIIc 40 years ago who is alive and feisty today.  There are stage 3 woman on this board posting their ten year survival statistic.  You have not drawn the "death card" and the card you have drawn isn't really worse than the card anybody else has drawn except in your own, overly dramatic mind.  In fact, it's not as bad as the card I was drawn, lower stage or not.

     If being exclusionary and not realizing that everybody here is in pain and worried is what you need to do, if screaming at your parents makes you feel better - go ahead.  That says a lot about your maturity.

    I will agree with you that people who have not undergone any treatments should not be posting in threads about treatments.  This entire forum is for sharing experiences and if you didn't have the experience, you should stay out of it.  But, if I had TCH and am stage II, that is no different from having TCH at stage III and I have every right and obligation even, to offer my experiences on how I got through it and what helped me. There are very few topics in this forum that ONLY relate to stage III women and I am pretty sure lower stage women don't particpate in those.

    If you think you have the corner on fear of dying because you have a III after your dx, than you need to think again.  A lot of people with lower stage cancer actually have more aggressive cancers than you have, and all of us have to face the possibility that we can die of this disease.  Like I said earlier - go to the stage IV forum and read their sig lines.  See how many started with stage I or stage II.  I venture to say it's more than started with stage III.

    Since you only have 18 posts in 5 months, I'm not sure how valuable this forum actually is to you anyway.  You don't participate much, and every post is all about you,  and yet you want everybody to post the way you want them to.  I find that very odd, almost troll-like behavior.   You've been told several times that you have your numbers off, yet you keep coming back here posting more nonsence about your prognosis.

    Finally, it is very easy to block people whose posts you don't like.  You can go into your "home" and add lower stage women to your ignore list.  That way, they will all disappear to you.  I certainly intend to make use of it.



  • debbie6122
    debbie6122 Member Posts: 5,161
    edited December 2010

    I have responded before to a stage3 b/c no one else did and i had experienced what her particular problem was and wanted to help her she replyed back and thanked me and said she felt better, i thought this board was to help people thats why i come here, to help, if i can. just as you all have helped me no matter what stage/grade you were- btw my oncologist also says grade is more important so i agree with barbe.

    I can just see us all meeting in vegas and mo saying, you lower stage girls sit on this side of the room and dont look/talk to us becasue we are more important-geezzzz  what is this a competion and btw is it really disrespectful that we may want to comment to help you???

  • Bugs
    Bugs Member Posts: 1,719
    edited December 2010

    OK, whether I agree with AgentMo's post or not, this has become a bash AgentMo thread.  She respectfully stated HER OPINION.  She didn't ask for agreements, she didn't ask for bashing.  I am reading some NOT SO respectful opinions aimed at her.   This is one woman's opinion and she has a right to have them just as everybody else does. 

    Enough already.  

  • lrr4993
    lrr4993 Member Posts: 937
    edited December 2010

    Wow, this thread is unreal.  

    For the record, I was not scared off.  I rarely am.  I meant what I said.  I always do.  No need to read anything into it.

    I am not going to engage in a continued battle of "who is worse off" because I really don't want that title and it is a ridiculous thing to argue.  

    To the OP, I think I do understand your point, but still disagree with it.  I do not take your posts to suggest that someone said something disrespectful or hurtful about your stage - nor would I ever expect that to occur here.  Had that been the basis for your upset, I would consider you to be in the right.  I fully agree with the poster who said that respect for others is important.

    However, it seems that you have a problem with the simple fact that some posters in their signature lines have stage 1 or 2 as opposed to three, and that hurts your feelings.  I mean this in the most considerate and concerned way - if that is your issue then the problem is you.  The great majority of the world's population does not even have breast cancer.  If you go around getting upset every time you encounter someone who is better off than you, then you are going to have a really difficult time with this.  It is an incredibly negative approach that, in my opinion, serves no purpose.  It is unfair to others and, perhaps more importantly, it is an unhealthy attitude that unnecessarily adds stress to an already extremely stressful situation.  

    I know you are scared.  I am scared too.  Although I had negative nodes, the super-aggressive nature of my cancer has me in tears almost every day about the thought of dying from this. . . and this is coming from someone who rarely cries.  Be upset, be angry, wish it did not happen to you . . . we all do.  But don't hold it against others because they may (but not necessarily) be in a better position than you.  

    I am done with this.  I am going back to my usual threads.  I truly wish all of you the best of luck with your treatments and wish for all of us that this horrible and scary disease never returns. 

  • D4Hope
    D4Hope Member Posts: 352
    edited December 2010

    Sorry I don't feel lucky just because I am only a stage two. I will however stay out of stage three threads.

  • gutsy
    gutsy Member Posts: 391
    edited December 2010

    Agentmo, with all respect is there not a German forum for stage lll women. That at least would give you the option to post and share on more than one forum. It seems to me, that no matter what anybody says you don't want anyone who is not officially stage lll to post on here. Perhaps having more than one venue to share will relief some of your frustration with this forum.

  • elmcity69
    elmcity69 Member Posts: 998
    edited December 2010

    as Bugs said: enough already.

    AgentMo just voiced a version of what ALL of us feel - whether it's a Her2+ gal thanking God (or lucky stars, whatever you believe in) she isn't triple negative, or vice versa; or node-negative gal relieved not to be in the node positive crowd; and ALL OF US shivering at the stage IV thread.i'm sure many of you will cringe at my little cancer "bio"...but it is what it is. 

    if women cannot voice here the thoughts that only the rest of us can understand, then these boards are useless. 

    we need all of our energies toward the positive, toward living, celebrating every day we are HERE on this gorgeous planet. onward to a healthy, happy 2011.

    <3

  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2010

    Nancy0531.....very well written :)

  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2010

    As I have posted a few times here....ladies, please play nice!!!!...everyone is entitled to their feelings...they are their own right or wrong!!!  Please, Please, Please, lets be respectful of each other...

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited December 2010

    I agree with AgentMo. Statistically our prognosis is worse and I do find it a great comfort to share with others in a similar position though I also welcome all respectful contributions and realise there is only a thin line separating stage II from stage III.

    Those who think our statistics are not worse, why did you rush to get the earliest possible treatment? Were you relieved to find no nodes or not too many?  Would you have been laid back about having 5 nodes, or 10, or 20?  Would you be OK about having a bigger tumour? Why not wait a year for that nasty treatment?

    We shouldn't have to justify ourselves, after all......

    Forum: Stage III Breast Cancer
    You are not alone. Meet others who have Stage III breast cancer.

    That's the bottom line for me, otherwise why not just have one huge forum?

    Love and hugs to all on this healing journey.

  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2010

    GROUP HUG?????Laughing

  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2010

    ((((((((((((((((((((((((((((((((((((HUG)))))))))))))))))))))))))))))))))

  • lago
    lago Member Posts: 17,186
    edited December 2010

    I'm not angry with Agentmo for her post. Just wanted to express where I'm coming from. I'm one of those stage IIB without nodes. Even without nodes it puts me at the same risk as IIB with nodes because my tumor is larger and in many cases higher grade. Add the HER2+ factor and I am even more at risk. (Herceptin is an awesome drug… if it works. The chances of it working is 50/50. If it doesn't the prognosis is not good.)

    This disease is so complicated that even within stage we are so different. Seriously there is a bigger difference between stage IIIA and stage IIIC than there is between stage IIB and stage IIIA… just saying.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2010

    We should have a forum for those with micromets (me) and vascular invasion (me). It's not only through the nodes that cancer travels.......

    But I wouldn't want to isolate myself into one corner as someday I may need the valuable info of those that have gone before me.

    So sad really.....

  • gutsy
    gutsy Member Posts: 391
    edited December 2010

    It is sad that there is such intolerance for others who don't have the official stage lll status to participate in discussions. It is almost scary that we as women with the same dreadful disease want to decide who is deserving to participate and who is not.

  • krcll
    krcll Member Posts: 343
    edited December 2010

    I in there with the group hug, Jenn, Karen, Sherri and Tupelo!

    (((((((((((((HUG))))))))))))))

  • InTwoPlaces
    InTwoPlaces Member Posts: 354
    edited December 2010

    Sheila,

    I'm slightly offended by your post. It seems like you think that all of us who is state II don't have any cancerous lymph nodes or that our tumors was much less than yours in Stage III.

    And I fully agree with what Lago wrote; being HER+ put us in an even higher risk.

  • mumito
    mumito Member Posts: 4,562
    edited December 2010

    I would like to join the group hug.Is that okay?

  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2010

    Mum...its a group hug....of course come join us...the more the merrier!!!!!

  • mumito
    mumito Member Posts: 4,562
    edited December 2010
    Thankyou lets make this a healthy happy new year hug.((((Smile)))))
  • sheila888
    sheila888 Member Posts: 25,634
    edited December 2010
  • Gabrielle
    Gabrielle Member Posts: 73
    edited December 2010

    Hi,

    I thought I'd wade in here....   Smile

    The OP said something to the effect , "where I don't have to read in posts how unlucky I've been".....in being Stage III v. something lower.

    I agree that the lower Stage folks need to mind their Ps and Qs in messages posted on this thread that draw a favorable distinction between themselves and the higher stage folks.  However, I'm not sure I'm seeing those kind of messages.  That is, I don't see messages over here triumphing a lower stage. 

    The messages that set ME on edge...and again, I don't see these posted here, thank God...are those advancing an anti-med, holistic, new-age, wheat-grass kind of diet and lifestyle.  Like all we needed to do to avoid this disease is to drink the juiced toenails of some rain-forest critter. 

     If I see any of those kind of messages, I'm coming back here.  <pass me a beer.....>  Wink

    -Gabrielle

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