Why am I only ok talking to stage III ladies?feeling like a jerk

I have been missing in ACTION (full of life's drama, like every other human bean on the planet)

Big hugs

Josiekate thanks for this post, I often have felt guilty for my dismissive thoughts of stage i and II people, I think to myself "they have no idea, they are just attention seeking"  than I remind myself that although the treatment was brutal, I found the worst part emotionally was waiting for diagnosis and the first week or two after diagnosis.  At the time I knew nothing of stages, I just thought BC equals death.  Of course education on the topic has taught me differently.  I dont think anyone from a lower stage can really understand what a "higher" stage is going through, but we can somewhat understand what these lower stages are going through.  I cant fathom what our stage IV sisters are going through, and Im sure they on many occasions have the same feelings towards us.  In the end our feelings are our feelings and we shouldnt feel guilty about them, but sometimes it helps to try to put ourselves in someone elses shoes and hopefully they will be respectful and try to put themselves in ours!

FINGERS CROSSED for you Josie!  So glad to hear you're getting through AC....yuck...or, as I continued to say over and over during treatments....BLECH BLECH BLECH.  It was the easiest thing to say without wanting my intestines to exit through my mouth...LOL.  Wait, that really isn't funny. 

I can't thank you enough for helping me...I felt so "mean" and held in what I was thinking for so long.  It's not that I don't respect my sister's in other Stages...because, really, we can't ever walk in someone else's shoes...and that's where I felt "mean"... my shoes were 5 sizes too small, full of poison, razor blades and affected every cell in my body (brain included!)...so, it's just a weird place to be I guess. 

I use to read...Not diagnosed, but Worried.  I can't look at that anymore.  Thank God other sister's respond to those posts.  It just hurts me too much.  Hard to explain, but I know the sister's here understand....

Mimi - GIRLS KICKING A$$$!!!  Love it.

Josiekat,  All have the personal freedom to visit whichever threads they choose, and if you feel the most comfortable with those in the same Stage, you do have the option of sticking in the Stage III category.  This site is nice in that you can get with others with a similar diagnosis.  Don't feel bad about it.  It's great if you feel you have made a connection of any kind.

However, I butted in to say, there is a lot of info. to be found on threads of different stages, that would apply to you as well.  There is a lot of support too.  All I know is that women in ALL the categories have offered helpful comments to me and been encouraging.  I appreciate them all, and to be honest, I think that when I write my posts, I don't really take the Stage into account too much.  I just write woman to woman.

BTW, I CAN understand you.  Here's proof: I created a whole thread for women in MY own age group, the Middle-Aged thread, because that is who I mainly wanted to connect with.  And to kay1963, who I know from there, I say, now I know your little Stage III secret.  ;-)

Finally, I don't care if more advanced Stages think of my Dx as "Cancer Lite," because I have been know to call it that myself.  But like others have mentioned, I still had all the unknown terror in the beginning. Like everyone else, I have scars, and who know what kind of collateral damage from radiation that could show up some years out.   With "Cancer Lite," sometimes we get "treatment lite" too.  Under current guidelines, chemo was not indicated for me.  Was radiation and Tamox. enough?  I hope so.  Every stage, except Stage IV obviously, is at risk for recurrence.  No matter what your statistical risk, any earlier Stage could fall into the minority to get mets.   In that sense, we are no different.  

Josiekat, if you want to look for differences between the stages, I'm sure you can find them.  If you want to look for similarities, you can find those also.

I am certainly all for freedom of expression and have opened my mind to the experiences of all.  Josie does not seem to be looking for "luck"...rather, she is seeking understanding.  No one would ever assume they know what another Stage goes through...we know better than that.  However, our feelings are our own.  If you didn't suffer through AC chemo, why would I feel that you would understand how horrible that was and what I had to fight through.  When a Oncologist fears that I might not live through the AC treatments...is that something you experienced?  It's not about "mine is bigger than yours" ... it's about the entire difference in treatments, SE's, expectations, understanding, etc.  That's why this is posted on the Stage III thread.  Can you relate to hearing...your a II, oh, no sorry...you're a three and we need to run more tests to see if your a IV ... and then the call comes and you're elated to hear you're a Stage IIIc...or how about getting out of a surgery that was suppose to last 2 hours...ended up being 5 1/2 to find out the cancer spread all over the place.  That was just in the first two months.

The fear of reoccurance resides in many of us, that's true.  I am NOT a statistics person, but I am sure many people have reviewed those.  Therefore, you might be able to understand how separated some of us feel from other Stages...how the research is terrifying at a higher level statisically..whether anyone feels they have value or not...

I would like to say again ... I have great love and respect for all my sisters, any stage and their knowledge and support means everything to me.  For Josie to have the courage to post this thread, helps the Stage III's identify that our thoughts don't make us bad people, mean or separated from anyone else ... it just makes us human and gave us a place to express ourselves safely.

Cool - you are totally right ... but I think the post was to help anyone in this Stage understand that it's ok to have feelings, and express them.  It's really a perception that a "separation" has taken place.  I don't think that is the case at all ... and, did Josie really need to explain every little detail when she started this thread?  There are many forums that separate Stages that have been set up by BCO..."We are not alone...meet others who have Stage III breast cancer." 

Now, you being in Stage IV, my heart hurts...I cannot ever totally understand what you have gone through, what you feel ... but I would always be here to support you, hold your hand, offer you anything I could...even when you were in the earlier stage...the major difference is that I know that higher stage is much different...and I respect that.  Just as I respect Josie...and everyone.

Does that make any sense?

Did Josie need to explain every little detail when starting a thread?  Well yes, because the written word is all we have to go on here.  I know not everybody is a professional writer but people should take care to say exactly what they mean in their thread starter and subject line.  Had she said "I feel comfort from other stage IIIa's who have success stories" that is an entirely different thing that saying she couldn't feel compassionate to her friend who was an earlier stage, or even read the stories of Stage I or II.  

I realize she is new and maybe she didn't think that people from all stages read this board, as all the others, and maybe she doesn't realize that some cancers, while small, are more aggressive than she knows.  Maybe she doesn't realize the staging system is becoming outdated with the new information we have about the way cancers behave.

And, we aren't only reading our individual boards so maybe she didn't realize it would sound a bit harsh.  I know she's been through misery and I understand the feeling that she may have it worse than somebody else but I think it's a false construct.  Whatever your worst suffering is - it is the worst to you and that early stage woman who had a lumpectomy is just as nervous as you are at hearing cancer.  

I know a woman who had cancer, had a lumpectomy and that was the extent of it.  Yet, it seemed to scar her deeply (if not physically - she looked perfect!) and so I can't discount that or the lessons she had to teach me about living with worry and fear as we all are going to do no matter the stage.  

There are enough stories about women with very early stage cancers dying that you can't pretend early stagers are protected and don't have the right to be scared.  Plenty of early stagers have longer, harsher treatments than laters stages.  It's just a dumb line, often meaningless and here I am, proof of that.

An interesting thread.

Josiekat - The staging thing can be pretty meaningless. It does not reflect the extent of my experience. For one thing my cancer was a recurrence following a lumpectomy 10 years earlier. So I had already walked that path and thought I'd been able to leave it all behind. I've lost both breasts and had all nodes removed leaving me with lymphoedema and hypertrophic scarring. Ovaries gone too so I am dealing with sudden surgical menopause only months after being pregnant. And I have osteoporosis which is getting worse with every AI I take. During chemo I had to be hospitalised after every dose and finally I went into anaphylaxis and had to be resucitated. Within my stage 1 dx I have some very iffy prognostic indicators.   This is no walk in the park. And if anyone told me this was "cancer-lite" to my face I think I'd deck 'em!

Even though I'm only lla the quote that expresses my feelings best is this: "surviving early stage cancer is like crossing the Mafia and getting away with it - you may live but you will forever be looking over your shoulder".

That's how I feel. I had a DMX only. Turned down chemo, rads & hormone blockers. Oncotype score was 9. So how come whenever I have a pain in my hip or a sudden cough does my mind immediately go to "mets"? Maybe years from now the fear will go away but it's still too new for me. I'm not sure I will ever feel whole again and I don't mean just physically.

CoolBreeze wrote:  "Cancer, despite the stage, has lessons to teach us all."

I feel that way too.  My own comments to Josiekat were really meant to point out that sticking only to the Stage III forum does limit the potential for info. and support and for meeting some nice "other-Stage" people, but no one can read and post everywhere and I can support her choosing to be selective for her own reading and posting.  Fine with me.  There need be no "battles" as we ALL are somewhat selective, aren't we?  (Forgive me anyone who has actually posted in every forum and on every thread, that I have gone and misrepresented you with my last statement.)

I don't see a battle here, just an interesting conversation.  Okay?  I like Josie and hope she sticks around and I hope that the discussion sparked by her post is interesting to her too.  

I know what she posted is not unique to her and is a common feeling, and yes, she has a right to what she did.  Her emotions are part of the human condition and perfectly normal to think you have it worse than somebody else. She does have more treatment than her friends, but not all lower staged women.  

But, it's not fair to say you don't even want to hear their stories, and that's why she called herself a "jerk." (Which she isn't.)  She just doesn't know that lower-staged women have sometimes harder treatment than she will and that outcome isn't always defined by stage.

My two closest cancer friends were diagnosed with me 3 years ago.  They were stage III and I was II, and I'm the only one who is now Stage IV.  You just don't know, and I'm glad they listened to my experiences without judging.

Fuzzylemon, I'm not challenging you but am confused.  Your contention seems to be that unless you have experienced something, you can't know what it is like.  I've read too many novels to believe that - I have lived many lives!  LOL.  

I didn't go through AC chemo but I went through TCH, and taxol weekly.  Then I did Navelbine until I got c-diff.   Does that mean our experience is so vastly different that we can't relate?   Because I didn't do your exact chemo, I am unable to know what you experienced?  

You said, "No one would ever assume they know what another Stage goes through...we know better than that."

Is that what you believe? That cancer is defined by stage only?

I do think I know what other women with cancer go through, staging aside.  We are sisters in this.

Staging by size and nodes is only part of the story these days, with HER2, Triple Neg, IBC, etc, and like I said, the way the board is set up makes it divisive.  In the chemo section, you don't really know the staging of the ladies getting chemo, just that everybody is getting chemo.  Those threads are full of women who all start chemo the same month, a variety of chemos and stages. They all manage not to differentiate between each other, which is a good thing.

Let's turn it around:  Am I supposed to believe that your experience is less important than mine, because I have a terminal illness?  Am I supposed to have a hard time listening to your story about AC, and feel like your suffering isn't enough, because you may be cancer-free for the rest of your life, and I won't be?

I don't feel that way, if I'm supposed to.  I believe your suffering is real, and important, and I hope treatment does provide you with life-long results.  I know you will always be afraid it will come back and that fear you have is no different than the fear of a Stage I or II person.

We should all be able to relate to that - it is our common ground.

That's the way the OP post came across to me: as if suffering was defined by Stage alone, when it isn't.  She will end treatment, successfully I hope.  Her friend has ended treatment.

But, in the coming days and years, BOTH of them will be afraid that their cancer will return and those emotions, that fear,  are exactly the same.  And, indeed, no matter what the stage - it can.

By all means, everybody should find stories of people they can relate to and use them to keep themselves going and to provide hope.  But, those stories may come from places unexpected so don't close your mind or heart! 

1Athena1 wrote:

Thanks. :-) I wrote that on my signature line, then took it off, thinking: "I'll feel like an idiot if I get mets." We shall see....

THAT'S where I saw it!  Where did you get that quote from or did you come up with it yourself?

"... 2 of them did not have it and the 3rd was very early stage. I felt truly jealous ..."

I guess that perfectly sums up the feelings of some of us stageIII'ers, too.  Lower stages are jealous when somebody does not have bc, higher stages are jealous of that as well, but also of those who where lucky enough to catch cancer earlier. While there is obviously no gurantuee for anyone of us, stages do go along with prognosis and that prognosis is not a number somebody made up just for the fun of it. 

I guess looking for others with a similar stage is like finding out that you are not the only one who has to deal with a crapshot this bad. And that is a very human feeling. As the borad title very truthfully states: The stage three board is for stage III'ers to see that we are not alone. 

Oh dear, AgentMo!!! You just brought it all to a head again, and it was going on so nicely....sigh.

IT DOESN'T MATTER WHAT STAGE YOU ARE. YOU HAVE A 50% CHANCE OF RECURRANCE. You either recur or you don't. It's THAT simple. Staging is used ONLY to set down a treatment plan. That's it. Simple. Don't make it harder than it is. Again - I have seen way MORE "lesser stages" become stage IV than see 3 go to 4!! I'd rather be stage III, grade 1, than be stage I, grade 3!!! See the difference? The stage 1 lady is in a worse position! 

So by saying that catching cancer 'early' is good, define early!!! I'd say early was before it became cancer!! Even if you found someone with the EXACT same cancer as you, one of you will recur and one won't! Which one? God knows and He ain't telling!!