Stage III versus lower

allalone

Barbe1958: How does that work? Well, I can't be the only one here who had inconclusive scan results and botched biopsies. It took 3 months of mucking around before I knew whether I was Arthur or Martha - not that it really matters because cancer is cancer whether we're O or IV.

And of course I know that Stage O's lose their breasts - and that node surgery has risks of LE - I was merely giving a bit of support for Agentmo who, like me, probably had her whole armpit removed and as such is probably more at risk - but that's my opinion, not fact -  and giving her support does not mean I'm in favor of making this forum exclusive.

And now I'm wondering why I ever left the comfort and distraction of Games and Humor !!!!

lago

All I can say is I'm stage IIB, lost both breasts, lost level I nodes on left side. Told I had a 1% chance of getting lymphedema (and now have it). I'm currently doing 6 rounds of chemo. Will be doing 5 years of Als. Was in a grey area for rads so didn't do them especially concerned about the heart on left side.

Is this all that different from many stage IIIA?

I am not jealous of anyone that has a smaller tumor, lower grade, lower stage and is HER2-. I'm happy for them. Yes they should do the happy dance. I'm angered with the radiologists that didn't find my 5.5cm tumor in my former A-small B cup sooner. 4 years prior I has a scare with a diagnostic mammo and ultra sound in the same location but everyone said it was nothing. They should have been watching this spot closer.

lrr4993

I have never posted in this forum but this thread came up on the active topics list and got my attention. BTW, that is probably where a lot of "off-forum" comments come from.  I have found myself in the "wrong" forum several times by following the active topic links when a title catches my attention.

I have to say that I disagree with your post.  Not being ugly about it, but I do disagree.  Everyone who goes through this has something to offer those who come along behind you, whether their diagnosis is better or worse.  I would never begrudge someone wanting information or advice about this horrible disease just because they had the so-called fortune of a better diagnosis than me.  I see no room for jealousy over staging.  As others have pointed out, staging means very little.  Those stage 1 and 2 women whose posts bother you may go in for a regular exam/scan next week and come out of it stage 4.  I am currently stage 1, but I am 40 years old, triple negative, grade 3, 98 % proliferation rate, and metaplastic.  I had no positive nodes, but metaplastic cancer rarely does, as it tends to spread by blood. For all I know, I am really stage 4 but it just has not manifested itself. I cannot imagine anyone thinking I am lucky with this diagnosis.  I cannot imagine anyone thinking ANY woman with cancer is lucky.  We are all unlucky and can all learn from each other and support each other.  Just my opinion.  

That said, I will stay off the stage 3 board as it obviously is an issue to some.

karen1956

Irr and others...please don't feel unwanted or that you can't post here.....We just all need to be respectful of each other....read what you want, don't read something that annoys you...and remember with writing, we don't have facial expressions, hand mannerisms or tone of voice to properly convey our message.  When I said I was jealous, its not against others, its just that I wish that my cancer was caught at an earlier stage....I am thrilled when gals don't have to endure the torture of chemo....We are all in this journey, all have our own feelings...some good, others not so good....but lets all be "friends"...isn't that what we're here for.....Lets play nice!!! :):)

barbe1958

allalone, nope, still don't get it. I don't see how you can be staged as IV and now you aren't. Somebody jumped the gun on your diagnosis before all testing was done or something, cause it just doesn't work that way.

Karen, you know that other stages get chemo too, don't you? Getting caught at an earlier stage has absolutely no bearing on recurrence. It just means you get a lighter treatment. As mentioned above, the lighter treated women seem to have a higher chance of recurrence!

Staging is strictly done to decide treatment. It has nothing to do with who is worse off or who is going to die first. GRADE is the more important indicator!

gutsy

Barbe, you are losing me here. I do think it makes a difference at what stage people are interms of diagnosis. If they had told me at diagnosis that I was stage 0, I think I would sleep better at night and live with less fear. I also think that at an earlier stage you have statistically less chance of mets and that is what many of us fear.

marie5890

I do hear what people are saying here in this thread. All of great arguments to support their POV's.

But I tend to agree with Barb. Staging its not nearly as important as grade. And I hate to think that ladies are being "judged" based on their stage. I tend to look at the grade more so than the stage. It seems far more significant to me when understand exactly what kind of fight each individual woman is facing.

This is about the beast known as cancer, IMO. It's not about where we are on the battle field. JMO 

barbe1958

That's the whole point gutsy! You don't have statistically less chance of mets at a lower stage. Your grade (the aggressiveness of your cancer) and the type of cancer is what is going to matter.

lrr4993

Karen - None of my comments were directed at you.  I apologize if you took it that way.  I was responding to the original post.

I can relate to your wishing your cancer had been caught earlier.  I do too.  I would love to be a DCIS or under 1 cm, rather than the almost 2 cm that I am.  Hell, I may even prefer a stage 2 of a less aggressive cancer to the nasty one that I had.  But it would never occur to me to be upset with someone posting because they did catch theirs earlier.  Just like I am not upset by the many posters on this site who have less aggressive cancers than me.  

I agree with you that we should all be friends here.  This site is for support.  Which is exactly why I so strongly disagree with the original post.

In truth, I have no reason to be on the stage 3 forum.  I ended up here only because of the thread topic in the active list.  I have never posted here before and will not again - in part to respect the requests of those who are bothered by it (I mean that nicely, not snide) and in part because I do not have as much in common with the women here as I do in other forums.  I mainly posted in the chemo forum until finishing earlier this month and now mostly the triple negative forum.  But should a topic be of interest to me, I would like to think that I would be welcome to post.    

sheila888

Okay I'm STAGE I

Treatment....

4X A/C    every 2 weeks

4X Taxol  every 2 weeks with

Herceptin 52 weeks

Radiation 30 something  ( Idont remember almost 7 weeks)

Femara for 5 years.

My stage might be different but I got all the treatments

And I don't like it when people say we got it easy. EASY??????????

I still worry each time I go for tests.

Have a nice evening Ladies.

EDITED to add 30 something radiation and charcoal burnt breast.

barbe1958

Sheila you said it so well!!

Irr4993, too bad another human being got scared off from posting where she has every right to post. Please reconsider and stick around. Some of the ladies are great! Others......think they're the only ones going through this.

sheila888

Barbe...I forgot the radiation so Im editing it.

meg8000

My diagnosis info is now set to private.  Should resolve the issue. I never realized breast cancer was so exclusive of one another instead of inclusive to help one another out.  Stage IV's don't want anyone but Stage IV's posting there.  Now Stage III's don't want anyone but Stage III's posting there.  Something seems to be wrong here.  We should all be helping one another deal with this beast.

gutsy

Ok grade is more important than stage, so why are these forums based on stages? I think I am more in the dark than I thought I was. I hope breast cancer support groups don't work this way. Depending on the stage or grade you are, you can or can't open your mouth.

Maureen813

Hi Ladies, Easy is never being diagnosed with bc.  I want a cure, no matter what stage we are.  BTW, the difference between 2B and 3A is virtually nothing, we all need support from everyone.

Love to all S0-SIV

Maureen

meg8000

 I saw in someone's post earlier in this thread that her Onc told her Grade is more important than Stage. I found that interesting because when I mentioned my concern about Grade 3, my Onc told me that Stage was more important than Grade.  LOL -  Do they just tell us whatever they think will reassure us?

D4Hope

Honestly Meg I just think they don't know. Grade one cancers may be slow but you can still end up a stage four. Mine is a grade 3+ and my first onc still told me I would probably never deal with the cancer again. I don't know what to believe.

karen1956

Come on girls, lets agree to disagree!!!  

Seyla and Barbe....I didn't mean to imply that people with lower stages don't get chemo, I was trying to say I'm happpy when someone doesn't need chemo and has an option for a lesser Tx.....we all respond differently to the Tx so even if we have the same Tx, it effects us differently....

I hope we can put all this bickering aside and be here to support each other and be glad that we are all still here!!! 

Come on....lets play nice!!!

sheila888

(((TO ALL MY SISTERS))) 

jenn3

Whew!!! What a storm.........

When I was dx'd with BC I didn't know there were different types, by the time I joined BCO I knew there were different types, just didn't know how many.  I lurked and read for a while.  Then I finally decided to post in the chemo area, Lisa (Paulding Mom) suggested I start a thread if one was started for the month I was starting chemo so that I could hook up with women going through the same thing at the same time.  At that time staging or type of cancer didn't occur to me, I just wanted to talk to women going through chemo at the same time I was.  Then I started lurking on the TN board to learn more information, again staging isn't an issue, we all have TN and want to learn more. I moved on to the Stage III board and found that I had a lot in common with the women here and they understood the emotional roller coaster I was on and I felt that I understood them.  From there I ventured some into radiation, but never connected with anyone, felt left out and ignored, then I played a few games, but nothing really stuck and now I skim the active topics, post on the chemo board with my "old" friends and on the Stage III and TN board.  I guess what I'm saying is that when one of us posts something, it seems to me that we're posting because we can relate whether it be to treatments, surgery, emotional highs and lows or our strange humor. 

Ya' know what's funny, when I meet women outside of BCO staging never comes up.  I have talked to women who have had minimal treatment and women who have had the kitchen sink thrown at them, but we've never discussed staging..........

Beesie

I didn't plan to post in this thread again - it is after all in the Stage III forum and I am one of the few who believes that the purpose of the Stage Forums ("to meet with others who are the same stage as you") should be respected. But given where this discussion has been going, I have to speak up.

There are many prognostic factors related to breast cancer.  Type of breast cancer, stage (which incorporates tumor size, nodal status and presence or lack of presence of metastasis), grade, ER/PR status, HER2 status, age at time of diagnosis, etc...  All are important and all factor into one's risk of recurrence/progression/mets.  However it is stage that is the most significant prognostic factor.  Stage represents the amount of progression of the cancer at time of diagnosis.  The further that a cancer is known to have progressed, the greater likelihood there is that it might in fact have progressed further, which in the future will show up as mets.  Most mets are not the result of a local recurrence that isn't found until it progresses.  Most mets develop because cancer is already in the body prior to the discovery of the cancer/removal of the cancer.  So it makes sense: The more that a cancer is known to have progressed, the greater the risk that might actually have progressed further.

Grade is important too, but not as important as stage. Grade is more important within the Stage. Someone who is Stage II, grade 1 will have a better prognosis than someone who is Stage II, grade 3.  But overall, women who are Stage II will have a more positive as prognosis than those who are Stage III. Certainly there may be some overlaps - for example, someone who is Stage II, grade 1 might have a better prognosis than someone who is Stage I, grade 3 - but overall it's Stage more than grade that determines prognosis (and therefore the likelihood of mets). 

I don't have time now to include any links to support this (but I do have the links) and probably won't continue this in another post later because I'd like to remove myself from this discussion and this thread.  But I felt that this had to be explained. 

Anonymous

When I first came to BCO for information and support,  I knew nothing about BC.  The more I read the more I learned.  At first when I was diagnosed I was told I was stage II but I wasn't really buying that because of my tumor size, so I thought I'm IIb, and that's what they said and that it could change after my surgery.  It did because the tumor was bigger than they thought and there were some positive nodes.  When my onc told me I am stage III, I really was more afraid because it seemed like III is almost IV to me, and before that everyone was telling me "oh your're lucky you have the good kind of breast cancer because they caught it so early.  Well meaning friends and family comments  I was offended because I didn't feel "lucky' at all, even  after believing I was stage IIb.  But stage III, Woe!!  That was so horrible to me to think I had stage III, and then I found this forum for stage 3ers, and they all get it.  I don't mind when lower stages come here for encouragement or info, but I do get a little offended when they give their opinions that may differ from what I know is reality for stage III.  Also, I love when Beasie gives us information.  Love your comments sista!!!  Thank you.

Barb

TonLee

Stage is used primarily for PROGNOSIS. 

It doesn't change the treatment between a 2 & 3, they are generally the same if the histology of the tumor is the same.

bevin

Stage smage... my dear friend had DCIS, and stage 0, diagnosed and treated with lumpectomy 6 years ago. Now she has bone mets. 

To me the purpose of the forum and any support group is to find and give support to each other, love one another, provide encouragement and to learn from one another.

It is so sad to me as a new person to these boards to see comments such as that posted by the person who started this thread.  I am so glad many respondees did not agree.

karen1956

Sheila...thank you for the beautiful bouquet   Karen

allalone

barbe1958 : Yup, someone jumped the gun coz my pre-surgery scans had hot spots they thought were mets.

gutsy : You wrote "I hope breast cancer support groups don't work this way" - when I looked around for a SG in my area I was told the only one was for early dxers only, which, when you think about it, is probably fair enough because they're in the majority - but it left me feeling more alone than ever (which is why I was so grateful to find BCO and be accepted, even tho I didn't know exactly where I "belonged").

jenn3 and Shanagirl : Yep, me too, I knew nothing about BC, and what a shock to discover not only different types, but stages and grades!! I still believe, though, that cancer is cancer and we're all in this together.

seyla888 : the flowers are gorgeous!  I've just learned how to do the pic thing, so here's something for y'all as New Year approaches (but I disagree with No. 8, I love daydreaming)

barbe1958

That's a good list allalone! But I agree with you that daydreaming is important. That's where our creativity comes from.....

maltomlin

Agentmo:I'm sorry if I've invaded your territiory i.e the stage 3 forum but to be honest I really don't see much difference between us. From your signature line I had a larger tumour, grade 3 to your grade 2, and only one less positive node. So where is the difference? What's in the stage? I still have the same worries as you. I 'm sure I had the same treatment i.e. surgery, chemo, rads and 5 yrs of femara - so what's different? It seems to me that stage 3 has very broad boundaries and that those who had 30+ positive nodes have a very different prognosis to those with 4, but they are all stage 3.

Despite our stage we all have very real worries and feel the same sword of damacles hanging over us. Staging is irrelevant. Look at the stage iv forum and just see how many originally dx with stage 1 there are. BC doesn't know our stage.

I don't post on stage iii or stage iv but do read. I've known too many people with lower stage BC end up at stage iv.

Mal

Nancy0531

I do not post very much on BCO, but since my diagnosis (as a Stage 3A), I have gained a lot of valuable information here. To explain, generally, I am very shy and even though I have the anonymity of the internet, it doesn't matter.  That's just me.  But, I felt compelled to respond in support of AgentMo.

What I find astounding is that many people, who complain about others lack of compassion or lack of respect for their feelings on other threads, are here doing the exact thing they complain about to AgentMo.  In fact, I have seen this thread referenced on another thread that I was reading, and not in a nice way.  This is a stage 3 forum, and while maybe not everyone agrees that stage is important, this particular forum is here for a reason, and should be respected. 

I don't think that means that others who are not stage 3 can't post here, I think it just means that it is important to respect the feelings of those who are stage 3.  While I don't know exactly what posts AgentMo is referring to, she is entitled to her feelings and opinions.  If you don't agree and want to attack her for having these feelings or accuse her of running people off the boards, you shouldn't respond--honestly it only makes it worse and stirs the pot.  If you want to gently debate or discuss, then feel free.

There are plenty of other forums within BCO to address everyone's particular situation, and there are certainly some more generic ones that everyone can fit into.  I realize that not everyone logs in and goes to a particular forum, rather they look at the active topics.  But that doesn't mean that once you go to a particular thread that you can't see what forum it is in.  You definitely can, and then you can determine whether or not it is appropriate to post a reply.   

Everyone with breast cancer has worries and fears, regardless of stage.  But, many crave the company of others in their particular situation.  They may want to discuss their treatment, compare the types of follow up tests ordered by their oncologists, the frequency of follow-up visits, etc. - many of which could vary depending on stage.  They may want to go back to their owne doctor and say "hey, how come I am not receiving the same scans, etc. as other lades with Stage 3?".  Having separate forums for each stage is one way to accomplish this.  Not everyone may agree, and that is their right.

For me, it all comes down to respect and common courtesy.  Please respect AgentMo's opinion and consider re-reading any posts you are about to make, and ask yourself "could my post offend someone, hurt their feelings, or come off as disrespectful?"

Just one Stage 3 girl's opinion... 

Nancy0531

Barbe, I think you are not representing Irr493's post correctly. 

You said, "Irr4993, too bad another human being got scared off from posting where she has every right to post. Please reconsider and stick around. Some of the ladies are great! Others......think they're the only ones going through this."

Irr493 said "In truth, I have no reason to be on the stage 3 forum.  I ended up here only because of the thread topic in the active list.  I have never posted here before and will not again - in part to respect the requests of those who are bothered by it (I mean that nicely, not snide) and in part because I do not have as much in common with the women here as I do in other forums."

To me, that doesn't seem like she is being scared off from posting here.