Mad tonight at Susan Komen

JudyO, I feel the same as you and I wish they would change the wording on DCIS. I know several people who had that and then others will say oh, such and so had it and they are fine and I always have to tell them, no, they did not have invasive, its not the same thing, not the same thing at all. Just like most of the celebrities, they had DCIS but the public things oh, see, they are fine, like the Good Morning America Anchor

Ugh...this bothers me so much. Can we band together? Stage 3 and stage 4 woman...there are many of us.  Why aren't we using our numbers to demand better treatment options?  Like immunotherapy. 

Who picks these people, and how do we get ourselves picked?  I don't want to be the center of attention, but if it would bring more awareness to the realities of BC, I'd do it.  

I thought I heard that they were going to change the name of DCIS to something that doesn't have "carcinoma" in it.  I guess they didn't.  

Amen!

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(In active topics at the moment)

kt

As a "Just DCIS" person, I totally get what you are saying here but want you to know that although we are "pre-invasive" the cells are still a malignancy unlike true pre-cancers like ADH/ALH etc. I had two surgeries (lumpectomies as the first one did not get a large enough margin), radiation and take exemestane for five years after a painful wire localization. We still are treated similarly to early stage invasive cancers and in fact are treated EXACTLY the same as stage one with low oncotype scores.

Most IDC begins FROM DCIS (although not all) that gets growing so if it is not removed, it is usually (but not always) a matter of time before we are right were you are. The reason some want to change it to a pre-cancer is the fact that many women opt for bilateral mastectomies which some doctors think is over treatment for this. I feel that if a woman wants to have a mastectomy (double or single) that should be HER choice.

While I understand you being upset that a woman with DCIS was the face of Komen, (and I totally agree with you about this as this was not what they should have used) please understand how many of us with a DCIS diagnosis feel when some people act as though it was no big deal for us. I can tell you first hand that it was indeed a big deal and I am reminded of this daily when my joints ache from the aromasin and when I look at my severely indented and deformed breast which is brown now from radiation.

I know Stage III is a very serious diagnosis of ANY cancer and I pray that all is well with you for the rest of your lives. I know that you are always worried about mets and I know that DCIS cannot metasticize so I can't understand your situtation truly. But, we were all given a diagnosis of breast cancer and I know I speak for many of my DCIS sisters when I say that we are getting a bit weary of being told we did not "have cancer."

Warmest regards. Just giving you a different perspective and I mean NO disrespect to anyone with a higher stage diagnosis.

I agree they certainly should have made a different choice.  But from my experience please be careful who you say this to (of course you are definitely in the right place here! ).  I made the mistake one time speaking with another early stage survivor about a friend of hers whom had just been dx with either LCIS or DCIS.  I made the comment "oh she'll be just fine", or something like that, truly meaning it that she WILL be just fine, but she took it as though I was minimizing hers and her friends pain and suffering. She land blasted me.  I hadn't even thought of it in that manner.  It IS still scary and frightening, even though the odds are much more in their favor.  I felt like doo doo (even posted about it here)and had to eat some humble pie after that,and to try to remember to be careful about what comes out of my mouth, even if with good intentions.  We've made up since then, but I do wince thinking about it and know it probably has made her look at me in a different way since then.

Take care,

Sharon