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

When I was Dx, it was very reassuring talking to people who were in a similar "boat" as me....YES, YES, YES, everyone's experience is their experience and their feelings are their own to be honored and respected....but when you are told that your treatment regimine includes BMX (or as someone said so eloquently...cutting off your breasts), chemo, rads, AI and ooph...you want to hear from other people who are/were facing the same thing.....What I see in the "stage" thread is a place for this connection.....there are many other threads that I visit....that have other themes in common......but I don't go to the stage 0 or stage 1/2 threads and I don't go to the stage IV threads....just my thing....but I do go to many other "unified" threads where we have other things in common such as type of cancer or recon or chemo.....When I was going thru chemo the TAC chemo thread was a lifesaver......

I'm not sure what I wrote makes sense....but please, please, please respect each other...our differences, our quircks or whatever....agree to disagree!!!   And Barbe....I see the numbers different that you.....its 100% for me....either I will or I won't progress...kind of like being pregnant...either you are or you aren't...thats 100%.....of course my onc has different numbers and they aren't so nice....its when I gave them up and went with my thinking that I could make better decisions....

BC just plain old stinks (well thats the polite way of saying it).....

What are you ladie's doing????????????????

Did anybody even read my post?? Do you think this is a productive way to use your time, is this uplifting to you?? have we all not been through enough..........

Really, I feel like everyone is in this big stats competion!!!!

This is so sad, I am really dissapointed in you guys, esp. when this poor girl just wanted some comfort and advice, look at what this has turned into!!!! Go out and enjoy your life , don' t spend time debating it..........

Blessings to all..............

Beesie, you say we should not "confuse individual persepective with facts and stats". SO TRUE!!! Why is everyone jumping on me for my PERSPECTIVE and observations??? I NEVER at any point said what I said was stats!!!!! You proved my point in your previous lengthy post about how and why early stages seem to recur more. Same as Elizabeth said - there are more early stagers to recur. So both of you agreed with me yet continue to say what I'm saying is wrong! I don't get it.

Is everyone going to jump on Karen for saying her odds are 100%??? That she "either gets mets or not"? 

How about ali68's comment about "if you can't deal with people who have a lower stage then to be honest you have not come to termis with Cancer and I really feel for you".

I am not the boogie man that some of you are making me out to be. I shoot straight from the hip and don't blow smoke up anyone's butt! 

Geez ladies!! Don't you have a bigger battle to fight than little me???

Ali68,

I agree with you and Athena. Sometimes it's a bit hard to hold ones tongue but you are absolutely correct in your assessment. Take care.

Caryn

Nope, don't agree with that at all. Statistics do not provide individual guarantees on recurrence, nor are they absolute. There are always deviations and anomalies, but it doesn't boil down to 50/50. Statistics cannot predict with absolute certainty how you, as an individual, will do and shouldn't be interpreted as such. A good example is lung puncture during port insertion. Statistics say there is a 1% chance of this happening when performed by an experienced surgeon. Well, it happened to me! Still, I would never tell anyone that the chances were 50/50 but I would agree with the crapshoot comment since there was no way of predicting ahead of time that I would be part of this unlucky, tiny minority. Wish I had won the lottery instead!

Caryn

Barbe, at one point you asked what statement of yours was inaccurate.   I responded, because the statement that every woman diagnosed with breast cancer has a 50-50 chance of recurrence is plain incorrect.  Beesie responded in greater detail, but she didn't say the same thing as you did.  There is a hugh difference between saying statistics can't predict who will have a recurrence and who won't versus saying there that we all have the same chance of recurrence.   Re-read her posts.

it is odd in regards to statistics....course of treatment...etc....I was told a lumpectomy would be the best course of action....i chose bmx simply based on my brain from years before telling myself if I ever got BC (having no idea there was more than one kind) off they would come...no scientific data....just me....fast forward....followup with top onc at MDA....one who had recommended/agreed with BS saying lumpectomy...."I think you made right decision".....when I asked what made him say that -was there something in the path I missed, etc (this guy was against me even having the CT, MRIs the BS ordered-very non-alarmist, etc), he just shrugged his shoulders and said "No, not at all, I just think it was a good choice-glad you did it". Hmmmmm. interesting. Here is a top researcher, who really only saw me out of courtesy as my own "stats" were not sufficiently complex or advanced enough to warrant his having me as a patient (being honest here- THANK GOD) but he did agree to follow up. So after that little revelation about the surgical choice he said yes, do the ai's...will likely back up what you did...best we have now...should do some good....if one does not work becasue of side effects knocking you out you can try out the others..... WTF?! all the science seemed to go out the window in my mind. for some reason he was just in a musing mood i guess....we had hit it off personally....I am like what is it with the "shoulds"...and the "best we have now"....I realized even then there were no absolutes but it really hit me. Crapshoot? coin toss? either is applicable. for some, some treatment will work, for others, will not. like life i guess. and i have to say the 50/50 makes sense to me in that spirit. there are things i have done and can continue to do in order to somehow prevent a recurrence that either will or will not occur. Don't stop research obviously, but in the end, it either happens or it does not. I take small solace in stats. Sure there is some statistics proclaiming I should. But in the end, I have to just to act as if. I won't live in constant fear. I can't. Because then there would be no adavantage to having an "insignificant" cancer...which is the biggest oxymoron on the planet. Some moments the mind wanders into the darkness and you know what pulls me back from the abyss? Knowing it will either happen or it will not. I certainly cannot prepare or live as if I would know, because I can't. None of us can. I can't even prepare for the worst since everybody's worse is different. Toss in our own dna and well, call it a day. Barbe is right in always stating her opinions are based on "observing here". empirical data in its purest form...to me, it underscores the nature of BC - personally, exemplifying the chaos theory.

Ack...sorry for rambling....just felt like putting my thoughts out there

hope everyone is having a good sunday night

Wonderfully spoken Beesie!!

If you do look in again, Beesie, please explain what the probability IS for ONE WOMAN to get recurrence?  How WOULD you express that in a percentage?  If 50% is incorrect, then what would be correct for "heads, I will; tails, I won't?"

If we put number crunching aside, can we all agree that each one of us either WILL or WILL NOT get recurrence?  

Josiekat,  I'm sure you will find a comfortable niche on this site, whether it's with your Stage III peers or elsewhere.  Some stay "home," some got a mind to ramble.

exbrnxgrl,  This is direct from my post on this page right above annettek's:

"Anyway, at the top of page 4 here, Barbe stated, "Staging is used ONLY to set down a treatment plan."  That comment acknowledges all the statistical findings that accompany our our stagings, when massive groups get categorized and studied by their pathologies.  She never refuted any of those stats, and they are great guidelines for making our treatment decisions. "

Yes, those group statistics can be applied to an individual for treatment purposes.  Agreed.

The 50/50 represents the WILL/WON'T for the individual. EITHER/OR.  I don't know of a better number to represent that.   Do you know how to represent that concept mathmatically?.

I just find it meaningless, since you could say that about anything in life, 50/50 that I'll get into a car accident today, get food poisoning, break my arm etc. Neither bc nor any of these things are really a coin toss (which is a true 50/50) because there are far more variables involved.

Caryn

OMG you girls crack me up, it's like being a kid again. "she said this what do you think of her".

 I think a few lady on here like to be "Queen Bee" and it's a battle who will come out on top.

I tell you what, it's put me off posting anything on stage 3 i'll stick to the friendly lower stage people they don't have chips on their shoulders.

Anyone want to have a go at me for saying this then go right ahead and Quote me if you like.

I hate this MFG disease.

I hate that's its made my kids worried there mother won't be there.

I hate that it keeps my mind unable to go to sleep with out drugs.

I want my life back.



Last chemotherapy feb 29 & can return to work.



Sometimes it seems to me other people don't have as many issues to deal with as me. And that little green monster tries to get out. It just seems like my family and I have had more than our share. But we preserver. Maybe sometimes I can't see other peoples struggles

ali68 ... Personally, I hope you wouldn't judge all people in any group based on the actions & your reactions to a few.  It's been my experience in life and on Internet forums that "friendly" and caring people come in all shapes, colors, religious affiliations or lack thereof, and now, even in "bc stages".  I hope you will reconsider your judgements.

Josiekat ... I started to follow this thread when you first started it for a number of reasons.  One reason was because I remember feeling some of the same feelings you expressed when I was first diagnosed.  I so wished that I had been diagnosed at a lower stage.  I'll be honest ... I knew in my heart that everyone dealing with something like breast cancer has their own struggles and as I've always said about life ... we all have our shit!  Still, when reading or talking with some, there was a voice inside of me that would be screaming "Oh man, how I wish the docs told me all I needed was a lumpectomy.  Oh how I wish I had caught this before it was invasive.  Why couldn't mine have all been DCIS?"  I guess the real feeling I was having was jealousy.  It's kind of sad to think back on it.  I was jealous of someone else who also had cancer because in my mind it seemed that they had a better chance at survival and they wouldn't have the same "fight" ahead of them.

As far as statistics, the only one I researched after I was already deep into treatment was survival rates.  I remember looking it up when I was at work one day.  Typed in "Survival rates for breast cancer" into google and then closed my office door and fell apart.  The stats were from the American Cancer Society.  Oh yes, they were old stats and there was verbiage in the information prior to showing the little stats table that there had been many changes in treatments and that the stats didn't take into account deaths that occurred due to other causes.  Still, all I could see was that within the stage I had been diagnosed there was a drastic difference in the chances of me still being alive in 5 years as compared to someone in an earlier stage.

Now, how did I deal with this?  Well, for me, I said ... okay, I will throw everything I can at this regarding treatment.  As time passed, personally, that has made me feel almost better than being an earlier stage.  I've read many posts on these forums where earlier stages have to make difficult decisions regarding treatment paths because the treatment may or may not be beneficial.  What a difficult position to be in!!  See, for me, there was no gray area.  Since I felt there was no gray area, I took a very aggressive approach that I might not have taken otherwise.  I've always been the type of person that second guesses many of my decisions.  This is one area of my life, and a rather important one, that I do not second guess the path I took.  I guess, what I'm trying to say is that I now accept that an earlier stage diagnosis may not really have made me more "comfortable".  I sure hope that makes sense?

You know, I think all of us struggle sometimes when we perceive others have much smaller issues than we do and should have an "easier" time dealing with those issues.  Whether it's hearing a friend voice concerns over their child getting a failing grade on one test when perhaps the child in your life is struggling with failing the entire course.  Or, perhaps, it's someone who complains that they've had absolutely the worst fight with their husband and how he won't do anything to help with household chores when perhaps the man in your life physically and emotionally abuses you every day.  So, how you cope with those feelings is up to each of us.  I like to fall back to ... "We've all got our shit".

Right now, a tough one for me to read on these forums is any reference to breast reconstruction not turning out as "perfectly" as the poster had hoped.  I know exactly why I feel that way and I feel justified - I lost my left implant due to radiation damage.  It looks bad to me.  Really bad.  Sometimes I want to post ... "Oh for goodness sake, at least you've got something.  Try to think about how much worse it could be!"  I guess I really try to remember that we all are dealing with things the best we can.  It would serve no purpose to try and remind anyone of how they should be happy things aren't worse for them.  That's something that, in my opinion, each of us has to come to terms with on our own.

Josie - You're probably thinking ... wow, what is your point by now!  Sorry, I don't go on about statistics but I sure can ramble when it comes to emotions, lol.  My point is, while your feelings when you started this thread are completely understandable and you, of course, are free to post whatever you want ... like me, you might want to find somewhere else to express them. You probably just said to yourself "Why thank you Mrs. Obvious!".  See, I started a thread that became very heated not long ago. *cough* Steve Jobs.  I really never thought the thread would go the direction it did and felt really badly about it.  I almost felt like I should just quit coming to these forums.  I didn't and I'm glad I didn't.  There is much to be gained here.  I hope you will also see that.

Good luck with your treatments!