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

Well heck,  I've had some doctors say I'm stage IIB and some say I'm IIIB.  My experience is the same either way. I've had all the treatment for a Stage IIIB and I can tell you I'm that scared.   I'm not sure where to read and post! 

Okay Bugs, for you alone, I will NEVER post that sentence again!!

If you only keep to one thread on these boards then you are denying yourself a world of information and support. When I see a title "I need help" I check it out. If I see a title "My nipples look good", I DON'T check it out. Most posters I know check out the "Active Threads" to see what is new on the entire board. That's why toes get stepped on. I don't think anyone has denied anyone their FEELINGS. I think people are just posting the reality of their situation.

FYI, it was the OP that said she felt like a jerk!! Those of us who responded told her she shouldn't feel bad. But, hey, there we go - telling someone how to feel again!

That's a pretty ignorant commnt Jacqueline. Please feel free to elaborate.

You said "lots of inaccurate statements", yet you refuse to tell me which ones?

I HAVE seen more lesser stage (even stage 0) become stage IV than from stage 3. Why do you say that's inaccurate - how do you know what I've seen? The stage 3 ladies get a lot of treatment thrown at them, so not much slips between the cracks.

And as for the comment I made about stage 3 and grade 3, that is MY comment, so how can that be "inaccurate"? It's like saying "I like purple". It's worth the paper it's printed on.

You have to learn the difference between a comment and someone spewing what they see is fact. I HAVE seen more lesser stages move on. That is my comment. If I said 80% of new stage 4 gals are from lesser stages, that would have to be backed up by fact.

So be very, very careful where and who you throw your ignorance at. It just makes you look like a fool who can't communicate rationally. (Throw out the ignorant comment and try to scare the poster into submission. Doi.)

Josiekat, herself, admitted that she was feeling emotional and was she was posting just one month after Dx.  How much perspective can you have at that point?  She further posted on the last page that she had no intent to belittle anyone else's stage or experience.  Let it go at that.  Our feelings about B/C are not stagnant.  They continue to evolve.

(Some Stage II's and I are going to crash a Stage IV thread now.  Wanna come along?)

KIDDING!     MAYBE NOT.  SEE YA!

This teaches me what so many other threads on BCO have: that just as the US and England are said to be "separated by a common language" so too are we BC patients separated by a common diagnosis. It would be a fallacy to think that one feels and experiences by stage (even if it is what some oncs tell patients as treatment plans are discussed) just as it would be a mistake to think that each "stage" group thinks alike, or that people who have experienced the same treatment "know" how it feels like for others. 

One thing that Josieket's OP shows is how a common disease does not necessarily bring people together. And she is not to be singled out in this. Not one bit. She sounds like a very nice person. I had a BMX and frequently find myself shaking my head in wonderment when I read of others' experiences with a BMX because they in no way resemble mine.

We come to this as different people and leave the same way. BC isn't really a club of sisters in as strong a way as people would like. This thread shows that. As we suffer, we must also be mindful to show compassion and humility towards our fellow sufferers. I truly think there are some DCIS sufferers on this board for whom BC was much more traumatic than for me, based on what I have read from them. It's just that way. Life is complex. We don't all have wonderful husbands and children/perfect lives. Some of us have complex histories and multiple diagnoses. We come as we are. With the exception of Stage IV, which is truly quite defining, stage is a relatively small part of it. 

Barbie, the inaccurate statement is that everyone has a 50% chance of recurrence.  You are talking about one way looking at of recurrence, ie either you have a recurrence or you don't.   That is one way of looking at it, but that does not mean every woman diagnosed with breast cancer has a 50% chance of recurrence.  Statement like that irritate the hell out of me because they feed fear.  

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction

Pickle, saying recurrence is a crapshoot is different than saying every woman dx'd with breast cancer has a 50% chance of recurrence.  Every woman has a chance of recurrence but I think the biology of the tumor is a good indicator of the chances.

I am not a statistician but I am sure the reason more stage I and II BC progress to stage IV is because there are so many more of them in the first place. In other words, most women who are diagnosed with breast cancer are in the early stages. People who are stage III have a higher chance of progression than earlier stages. Believe me, I wish this were not the case.

Barbe, no matter how you justify it, your statement is still wrong. Fact:  we do not all have the same chance of recurrence.

Thank you Mods!!! And thanks to whomever brought you here.

I should know better than to wade in here.....

Can I start by saying that everyone is right?  Well, not everyone since some very incorrect statements have been made but most everyone.

Individually each of us will either recur or we won't.  Stats about our stage or diagnosis don't tell any of us what will happen to us as individuals.  This is why so many here are saying that we are all alike.  Regardless of stage, anyone can progress.  And whatever the stage, the surgery and many of the treatments are the same. In some cases those who are lower stage may even require some treatments that are considered more severe (more women with DCIS do require mastectomies for a number of very good/logical medical reasons which I won't get into here). Add to this the fact that we all have different physical and emotional reactions to our surgery and treatments. Someone who is early stage might have a more difficult time with a particular treatment, or dealing emotionally with her diagnosis, than someone whose diagnosis is more advanced.  So in many ways, we are all alike and we all face the potential of the same problems and concerns.

But having said that, it is simply not true that the risk is the same whatever the stage of the diagnosis.  While stats can't tell us what will happen to us as individuals, they do tell us what will happen to a group of individuals who are just like us. If you put together one woman who is Stage I with one woman who is Stage III, there is no way to know what will happen to either woman. Hopefully neither will recur, but it's possible that both will recur.  Or maybe only one will recur - and it could be the Stage I woman or it could be the Stage III woman.  However, if you put together 100 women who are Stage I with 100 women who are Stage III, it will be very easy to say what will happen to each group of 100 women. That's where stats come into play.  And that's when the difference between the stages becomes very clear.  

For example (and I'm pulling numbers from the air in this example), if you have a group of 100 women who are Stage I, the stats may say that 10 of those 100 women will recur and 90 will not. If you have 100 women who are Stage III, the stats may say that 25 of those 100 women will recur and 75 will not.  If the prognosis for each stage is based on statistically significant data, then the differences in the prognosis between the stages is simply a fact.  And that, in reality, is where we are.  

This isn't to say that observations and anecdotes aren't true however observations and anecdotes are not reliable as indicators of what will happen in the future or what will happen to group of individuals (never mind what will happen to any one individual). Statistics are used because they are reliable. Within medicine, when a difference is stated to be 'statistically significant', it means that there is at most a 5% chance that the difference happened by fluke.  It is a fact that the stats show a difference in prognosis between the stages therefore we know that this is at least 95% certain to be true.  Given that the stage data is based on the analysis of hundreds of thousands of women over many decades - in reality the stats are almost 100% certain to be true.

Okay, so if we have 100 women who are Stage I and 100 women who are Stage III, we know that while we can't predict what will happen to any one woman, we also know - from the stats - that the risk is higher for the women who are Stage III.  A greater percentage of the Stage III women will recur.  However, this doesn't mean that in absolute numbers more Stage III women recur.  This is because so many more women are diagnosed at Stage I than at Stage III.  If we put together a group of 1000 women diagnosed with BC, we won't find that 500 are Stage I and 500 are Stage III.  What we are more likely to find is that 450 are Stage I and 150 are Stage III.  So, to use my earlier example, if 10% of the Stage I women recur, that's 45 women.  And if 25% of the Stage III women recur, that's 38 women.  This is why, observationally, we see more Stage I women who recur.  But seeing more Stage I women who recur does not mean that the risk that a Stage I woman faces is the same or greater than the risk that a Stage III woman faces.  It simply means that there are more Stage I women to begin with.  The risk for the Stage III women is still greater. It's basic, simple grade 8 math. And it explains why observations are not reliable as predictors.

Josiekat, my apologies for turning this into a stats lesson. But I do understand where you are coming from and I was frustrated to read some of the inaccurate information that seemed to downplay your concern. Many who've come here have focused on the fact that as individuals we share many of the same experiences. Someone who is earlier stage might have a more challenging experience and may face a more challenging future than someone who has a more advanced diagnosis. That is certainly true and it's one way to look at it.  But it is also true that while individually no one knows what will happen to you or what will happen to me (as an early stager), you are in a group that is higher risk and I am in a group that is lower risk.  You find comfort in surrounding yourself with others from your group. There's nothing wrong with that.    

One last point about the 'prognosis by stage' stats. It is important to understand that because breast cancer is a lifelong disease, it takes years to develop reliable stats about prognosis by stage. What this means that is more recent advances in treatment are never fully incorporated into the stats.  This provides a benefit for all stages, but it provides the greatest benefit to those who have a more advanced diagnosis and who now have more effective treatments available to them. So this leads to a narrowing of the differences between the stages. One day hopefully there won't be a difference - we will all face the same excellent prognosis when diagnosed, whatever the diagnosis, whatever the stage. We're not there yet but we're moving in that direction.    

@Beesie:

Thank you for this super summary you have written. In my previous posts I also simply wanted to let Josiekat know that what she is feeling is entirely human and warranted. And a lot of us feel the same. Because the truth is as simple as you stated it: the risk of recurrance is higher for stage III than for stage I. 

Beesie pulled her numbers "out of the air" to illustrate how statistics by stage are to be viewed and interpreted. She was not providing any actual statistics based on actual research. My apologies to Beesie if I am out of turn in speaking for you.
Barb, you do speak honestly and that is commendable. As to black and white thinking, well I personally don't view many things in life that way and because there is still so much unknown about bc, that's one area with lots of grey. How I wish the answers were black and white!


Caryn