RESPECTING the STAGE threads **RANT**

Mazy1959

1vmom,

You are welcome to pm me anytime. I will help you in any way I can.

GramE

Bitch = Babe In Total Control of Herself...!!!!!

Mazy1959

Just for the record..I wasnt angry in my post.I was trying to explain why we have vigils etc for our sisters. In general trying to bridge the gaps. No harm was meant by me at all. I pesonally am thinking of removing my stage.

If Bitch means Babe In Control Of Herself then I am one.

amlg1

Love Your rant,Deb..especially fitting for me today,when someone actually told me today,Breast Cancer is the best cancer to have,UGH !!!Couldn't respond.

cherneski

Anna, Yeah I have been told that too.  Ummm OK WHY?  Then they just stare at you.  Yep, just what I thought.  I really think we should be able to wack people with a wet noodle and get away with it!

cheers247

Deb, thanks for addressing Hope2 about stage 0-III being the same.  I also wanted to add that my 5 year survival rate is 40%, with a 10 year survival rate no better than 25%. 

Hope2, your 70-95% 5 year survival rate sounds mighty good to me, but it's not my reality.  There is an enormous difference between stage 0 and III.

Much Love!  Jessica

echosalvaje

Hey Deb, did you ever think your "Rant" would garner so much debate? Whew....getting through all these stepped on feelings on a day dedicated to love is proving to be a bit overwhelming!

One of my motto's in life has been, "you don't have to ask for my opinion....I give it freely." That said, I am sure that I have posted the "wrong" words in the "wrong" place too. Sorry. I love that the learning never stops....never tooo old for that!

The thing that really breaks my heart when I see these debates getting into that "pissing match" morass is that the bottom line here is that, your "hell", is "your" hell. Some days, my hell is a paper cut. Some days it is thinking about my son trying to commit suicide or that my daughter may have to fight this BC monster. Your hell is your hell and nobody has any business judging how "hellish" that is.

I come here for support and knowledge. I will continue to come here for support and knowledge and after everyone on these boards manages to get through this "rant", I imagine all the information will be given with a new sense of kindness and respect. Sending love to all of you beautiful ladies.

apple

once this disease touches you you're never the same.. and we are essentially all in the same boat.

This is a complicated forum for newbies.  Best to give them the benefit of the doubt..they'll figure things out soon enough.  a gentle guiding toward the appropriate forum or thread would probably be most useful.  i try to avoid conflict.. i hate that feeling of anger... it's hard to shake.

.

BooBee

Amen Apple.

Faith316

Just want to say how much this forum has helped me.  I didn't find it when I dx the first time in April 2008 with Stage IIB DCIS and IDC, but did last summer when I had a recurrence as IBC.  I am now stage III, although I do read on the Stage IV forum because the chemos that I have been on with my second dx (Xeloda and Tykerb) are more often given to Stage IV women than women in other stages.  But, I don't post there.  Just read.  I want to be respectful of their forum and I do, although by reading there, it helps me learn about my treatment. 

Curious -- are there any of you Stage III girls who also have been on Xeloda and Tykerb?

Thanks.

luv_gardening

Thank you Jessica for saying what I wanted to say about survival rates being the big difference between stages, not just treatments.  My statistics for 10 years are pretty dismal too which is why stage III is called advanced.

Since this is the stage III forum I do prefer to know I'm chatting with others in the same stage, otherwise we may as well just have one general forum where everyone joins in.  At the same time I appreciate hearing from anyone with their experience or thoughts if they are helpful, no matter what their stage.

I ask that people just show the respect and compassion they would like for themselves.  I appreciate that many are under incredible stress and so I just say to please do whatever it takes to find peace in your life. Hugs to all of you who are stirred up, angry or distressed, this is a rough road we're all on.

 (((((((((((((Big Group Hug)))))))))))))

Mollydog

I'm having trouble understanding the problem, but that's because I'm probably not understanding the rant correctly.

I see Breastcancer.org's discussion boards as a place to share our cancer experiences with other women who can understand what we're going through.  Because, let's face it, the general population does not and would not have the patience to listen to our questions or our tears or our fears.

That said, I realize, too, that awhile back, I participated in a triple negative thread.  But I'm inexperienced with discussion boards and only now realize what the hell was I doing sharing my feelings on a triple negative thread!?!?!?  But was my post hurtful or in appropriate?  I don't think so.  Could it still have been helpful?  I hope so.

I think of Breastcancer.org as a safe, comfortable place, but if it becomes a place for petty differences, I'm going to have to look elsewhere for support

barbe1958

I agree wholeheartedly Molly. It's not a place to just get technical information (I trust my docs for that) but to find out how someone dealt with a similar situation or decision!

The problem is that some people think that what happens to them as one stage has nothing to do with someone who had the exact same treatment or surgey in another stage. Some people think others are ghoulish to want to read other stages threads.

To simplify it: if I get a mastecomy and you get a mastecomy, it doesn't matter what stage we are in at that point. We had the same surgery. But, if you get a certain chemo and I didn't, why the heck would I post on your thread?

mymountain

http://www.womenshealth.gov/ defines early stage bc

What does "early-stage" breast cancer mean?

Invasive breast cancer is categorized as Stage I, II (A or , III (A, B, or C), or IV. The stage is based on the size of the tumor and whether the cancer has spread. Stages I, IIA, IIB, and IIIA are considered "early-stage" breast cancer and refer to invasive tumors that may have spread to nearby lymph nodes but not to distant parts of the body.

MM

cherneski

Sherri~ Thank you for paving the way for us.

MM~ Not sure what exactly you are trying to point out.  But my guess is it is off point of the original topic.  This post is not about proving points.  It is asking ppl to be respectful.  

We did get way off topic. 

IMO This issues is done.  Let it lie, the people that are going to get it, get it, the people that wont get it wont.  Period.  

sheila888

Deb...One point someone can have a 1.9 cm tumor is considered stage I. and 2cm or more is considered stage II.

THE END.

I LOVE AND RESPECT ALL MY SISTERS.

Huuuuugs

Sheila

barbe1958

Oh come on, Deb!! Let's talk about GRADE now!

Now GRADE is scary....

(Just kidding, everyone relax....)

4Sophia

I so appreciate this.  Here are a few comments I have gotten as well.  From my mother, "Tiffany, you don't have cancer anymore and it's just a small trace in only one lymph node".  Then from one of my professors, "My partner is a 20 plus year survivor of cancer, although the chemo and surgery almost killed him".  I think this rant brings up the point that there is no cookie cutter approach to BC, including staging, lymph node involvement, grade, ER status, HER status.  For me, it parallels my work in that there is no one way to do anything.  We all have to find our way and hope that others can learn to be more compassionate, even our sisters who have lower stages, smaller tumor sizes, etc.  Just adding my two cents. 

maryannecb

Whats in a stage?.... a stage by any other name can terrify as much! 

Maybe we should start Boards of terror....early terrified, not so terrified, was terrified but it has passed, still terrified, terrified but my family and friends think I am ok, not terrified but everyone else is for me....

My stage was what determined my treatment...but after that...I have become like all the other women diagnosed with BC...threatened with a recurrence whenever BC chooses to come back...OK, my chances are better that this will happen...but my mind has moved to a good space about it...and that is what I hope for all ,whatever the stage...peace and acceptance that what will be will be.

 I was glad to find this board when I was feeling hopeless, it does help to find others with nasty stats still doing well years ahead. But after my personal terror passed, I continue to post here to offer encouragement and maintain the links to people I have "met" along the way.

I admit to pondering the stage 4 threads...maybe to prepare my mind a bit, sometimes to see how someone I used to post with is doing, sometimes to cry. I check out the newly diagnosed ..most often to help. I always start with the active topics...so i see a cross section of problems.

Many threads and boards have themes which are common to all of us...so why not share ideas...even if the stats are not identical. Personally it doesn't bother me if someone doesn't understand ME...as long as I do. Most times if misinformation is given someone will correct it.

I would like to see posters be respectful to everyone, regardless of their stage. Everyone has their own personal level of terror regarding BC.,and that is what is most imprtant to them.

sweatyspice

I noticed this thread through "Active Topics" and feel the need to try to speak for some of my newly diagnosed, "is it or isn't it cancer, what the hell is happening to me?" Stage 0 sisters:

I can certainly understand why Stage 3 ladies would get pissed off by well meaning but clueless earlier stage advice.  On the flip side, ladies with invasive cancer often post what I'm sure they see as helpful advice in the DCIS forum. Unfortunately, many times that advice stirs up more confusion and fear than necessary.

So: 

Very rarely, if ever, will DCIS involve chemo. 

If you have a mastectomy for DCIS, very rarely if ever will you also have radiation.

If you have a lumpectomy for DCIS, you will probably have radiation (but if your grade is low enough and your DCIS is small enough you might be really lucky and escape rads). 

Also, if you have a lumpectomy for DCIS, many surgeons consider SNB optional.  If the pathology came back with an unfortunate invasive surprise, you'd go back for the SNB in a second surgery.  (SNB is standard with mastectomy though, b/c you can't go back in.)

Tamoxifen and ... I think that other one for post-menopausal women (I'm forgetting the name) are the only hormonals approved.

I can see how DCIS might not even seem like cancer to a woman with invasive disease.  But telling us you think so gets us pretty riled up.  This was not a surgery I ever wanted to have.

Much love to the higher stages.

Mazy1959

Hey Spice,

Stage 0 is cancer. If oncologists say its cancer then its cancer and all cancer sux. Yes the treatment is an easier road to travel. BUT........you are just as scared when you first hear that dreaded diagnosis as I was when first diagnosed. Best wishes to you, Mazy 

Billynda

My turn.  OK, I have not read all the responses on here (as it is 6 dang pages long now! - hot topic!).   I personally haven't ever been offended by anyone, although I am pretty new, too:)  Anyway, I just wanted to say that being said, it is hard to feel any comfort when someone with even Stage 1 tries to give it.  I know they are doing their best and I appreciate it, it just doesn't do what I need it to do.  I need to hear from IIIc sisters how well they are doing to make me feel any peace.  Even then, it's hard.  The thing too, is that there are so many different threads on here.  It's split up so good - Stage 0, 1, 2, 3, 4 all have their own little home.  Then, if you have questions about tx's, surgeries, etc. there's the generalized ones where everyone can go, or for age, or religion, etc.  So, I can see why someone might get a little unnerved at other stages putting in their two cents on a board that is specifically for a certain stage.  Yes, there are nicer ways to say it but that's Cherneski (as I'm finding out quickly).  ALSO, she did warn that people may be offended to begin with!

sweatyspice

Hey Mazy,

Thank you for your kind words. 

Your reply made me realize that I may not have been entirely clear.  One of the points I really wanted to make was that when someone posts in the DCIS forum about their experience with chemo, or mastectomy plus rads, it's not relevant b/c it's not how our disease is treated.  But if you've just been diagnosed w/DCIS you don't know that yet, and reading that sort thing will be upsetting for no reason.

If DCIS comes back, half the time it will come back as an invasive cancer.  So the worry factor after active treatment ends is probably similar to what ladies with invasive disease experience.  

Once again, all my best to the invasive girls!

Bren-2007

I've been following this thread, as it caught my attention in the active topics and it was posted by Cherneski ... who is a spitfire and full of passion and love!

Fact is .. there is a huge difference between Stages.  Also, newbies get on this site now, and it is so big and spread out, they kind've flounder around, wigged out and scared and end up in forums that might not be the best fit for them. 

As a newbie .. I got the smackdown a couple of times. Yikes.  I remember early on when I was struggling with the issue of Tamoxifen and AI, that after a good deal of soul searching and numerous attempts, I decided not to take them.  Geez .. I posted about that in a forum where a Stage III gal was struggling with her meds, severe problems with Arimidex, etc., and bless her heart, she was kind and loving ... I love you Karen!

About the same time, I posted something similar, and a Stage IV gal posted that she wished she could take an AI.  OMG .. smackdown time.  That was Lori in Florida.  That broke my heart and I learned a lesson.  We became great friends and exchanged cards and gifts until she died last year.

The crazy thing is, my treatment as a Stage I gal was lumpectomy and rads, but some gals with DCIS are having to have mastectomies because their disease is so diffuse.  I was lucky .. I didn't have to have chemo .. I was over 50. 

And no .. I absolultely do not know the fear of a Stage III gal with a recurrence rate of 40% in five years as opposed to my rate.  I do know that the pain of lumpectomy and rads is  the same regardless of the Stage.  It sucked.

Another thing ... for those of us that have been here awhile .. we have friends that started out as earlier stages .. and then they progressed to IV.  So, I may post encouragement to them in Stage IV thread, but never offer advice or stupid platitudes.

Love you gals,

Bren

edited for typo and stupidity

everyminute

It is rare for someone to proceed from earlier stage to a stage 3

Bren-2007

My mistake .. I meant earlier stage to Stage IV.

Fitztwins

Wow, how did I miss this thread?? oh yeah I was recovering from treatment.

Sherri - Thank you for starting the stage III forum. I was one of the first to raise my hand as a IIIC and knew "we did not catch it early".

To compare stage 0 or I, to stage III or IV.......(stage IIers on the fence).. I don't care wtf anyone says it is not the same. Sure we can all reoccur, but your chances are a hell of a lot smaller.

 To compare stage IV to any stage below? Never. My fears are different now. Even as a IIIer, I had hope never to face this crap again. That is gone.

We stage IVer talk about the next treatment, progression, scans, scans, scans, life insurance, is this the end, will our insurance run out, can we work, should we go on disability..the list is endless.

We had a similar rant on IV board a few months ago that was freakin ridiculous. Look, so what if we are inclusive or a clique? Do you really want in this one?

As to death watches: I HATE THEM. hate hate hate them. I don't mind the fun stories or sharing how much someone meant to you...Sure I have been told it is for those who care. Same thing for funerals, they are not for the dead (just burial), they are for the living. 

hollyann

Bugs, I deleted my posts.....I am publicly apologizing to you for my post.....It was wrong of me and I am a big enough person to know when I have stepped over the line......Your PM to me just caught me at a really bad time and I took it out on you......I reall yappreciate and care for all my BC sisters and I feel really bad about my post about you Bugs......I hope you can forgive me and let's just be friends.....I was feeling really low with Kbug's death.....We were good friends and I had just spoken to her a couple days before she passed.......I HATE CANcER!!!.....

As for myself I am going Monday for another breast MRI..I have sweeling on my collar bone and at the top of my breast...SOMETHING showed up on US but the onc would not say what, just that with my history we needed to do the MRI....WTF?????.........AAGGGGGHHHH!!!!!!.......

Bugs

I hate to bump this thread to the top again.  However,  I really appreciate the apology, hollyann, and I wanted to publicly say thank you.  Apology accepted.  We're good.

I'll keep you in my thoughts and prayers for Monday's MRI. 

Bugs

flash

Sorry to keep this going.  May I point out that respect is absolutely paramount. Some of us are mystery stagers.  The tumor board didn't even agree on my stage!

 I have been chastised by one person who didn't bother to read any of my tag line except for the Paget's and assumed I was stage 1.  I was politely told to go away.  I guess the IDC was just my imagination.

 I for one do not have a stage listed for a reason.  My onc says there's a bit of confusion about what stage to list me.  Do I go by the usual largest of the 19 tumors and be the IIA ?  She said well, you really aren't just a  IIA and treated me as IIIA because we knew there was vascular invasion and that multiple tumors (particularly the kind I had) are understaged. Of course we have the confusion of the tumor board and we have her piece de resistance: the node that was in my lung (too small for biopsy)  did disappear with chemo. 

 As my onc says "well, you sort of don't match clearly any of the staging requirements for II, III or IV but we'll just not worry about that and be glad that you seem to be currently NED.

So if the tumor board had trouble with the official staging, why would women here feel they know better?

Having grown up in a family where BC is the norm and I'm the 4th generation.  I will make the jokes and comments.  I don't find the newbies offensive and really believe that we are all in this together.

So I try to be respectful and interject only on things about which I have knowledge. But please, don't assume you know all about someone just because of their diagnosis listing.You certainly don't know me.