Mad tonight at Susan Komen

JudyO

Hi everyone, just needed to vent somewhere. Tonight on our local news they interviewed the lady who is the cure honorary survivor for our upcoming race. She went on to say how horrible it was to hear the news from a phone call she received from her doctor while in her car with her family. She talked about her struggles etc. Turns out she only had DCIS. From what I have read considered more pre cancerous and very highly curable. I felt they missed the boat in not having someone with stage 4 or having had a recurrence selected. In my mind those are the people we should be honoring. I doubt this women even had chemo. Sorry for my rant, just feel many people don't get the real stories out there. I know a lot of people who think breast cancer is curable! And if you do get it and die it was only because you didn't get you mamos when you should have. Lot of ignorance out in the general public.

hopefour

Yes, I too have noticed the lower stage stories are told...they end happier! I bought that mamos would save my life until my mamo missed my cancer and I am stage 3!! I truly just try not to look or read much during the month of Oct...its a bit upsetting!

angelia50

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

exbrnxgrl

ultimately, us stage IV ladies do not make pretty, pink, happy endings. We don't really inspire big bucks fundraising.

peacestrength

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. 

Kathleen26

Yes isn't it amazing how much ignorance "Breast Cancer Awareness" has created.

mary625

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.  

mdg

I agree completely!  I was only stage 1 but people act like it was fun or easy....I still had BMX, reconstruction and chemo.  What part of that is "easy"?  Just curious.....  I know that there are so many stage IV women out there that have struggled far more than myself and I pray for them every day.  I wish that when they would try to increase "awareness" they would really share information that is more real....like what it is like to live with stage IV cancer or that mammograms don't always catch BC (I found my lump a few months after a "clear" mammo) and that the majority of women that get BC DON'T have any family history.  All this pink crap and supposed "awareness campaigns" don't show and tell women what they REALLY need to know. 

kt1966

Amen!

Check out Bestbirds MBC blog 

(In active topics at the moment)

kt

JudyO

Just checked out Bestbirds blog, excellent article we need more of this info out....we need money for the cure!...and also more education, another thing the general public don't get is that breast cancer people aren't free of the worry just because we made 5 years....

april485

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.

LauraW68

I'm ILC Stage IIIa. My tumor was 7.2 cm  

I see so many IDC mentioned on the facebook breast cancer sites, in ads, etc. but not many with ILC because it's not as common.

I know we exist just wish we were more prominently spoken for too since ILC has a way of getting missed on mammograms and ultrasounds until they are big enough to form a thickening "lump", dimpling of the skin, and/or nipple retraction... which is all of three ways I found mine even after doing monthly self exams. I was a big chested girl with lots of dense tissue and only found mine by the Grace of God. I felt like something was biting me under the arm and looked in the mirror and saw the dimpling on the side of my right breast then felt the big lump and two days later noticed the nipple retraction.  

Women need to know that breast cancer can come in more than one form or fashion so to speak.

pupfoster1

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

april485

pupfoster (Sharon) Go easy on yourself here  because although us DCIS folks are most definitely a little bit sensitive about us sometimes being minimized, the fact is we WILL be ok and we did not have to have chemo (no one gets chemo for DCIS or LCIS) and will not know what you higher stage people go through from that perspective, and we know we are blessed and lucky, trust me.

It is just that it is still a serious enough diagnosis from the point of view of someone who is going through all of the treatment that we endure and to have it minimized by a sister who should at least understand some of what we feel smarts a little bit!

We have a chance that our BC will recur (although we do not have to worry about mets unless the surgeon missed seeing an IDC or ILC that we don't know about) cause we still have a higher than someone who never had BC chance to get an invasive form of BC in the future otherwise we would not have had to have Rads and take an AI or tamoxifen to prevent this.

So, the worry is never over with this disease despite the stage at dianosis. Obviously with a higher stage, your worry is compounded by the possibility of mets and we do understand the difference. I wish you peace and hope that you never have to hear the words "It's back."