RESPECTING the STAGE threads **RANT**

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

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.

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

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.

.

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.

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

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

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

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. 

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.

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!

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

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

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!!!!!!.......

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.