Women with DCIS are not the enemy.

I've had both high-grade invasive BC and DCIS and what I always say is they are both awful, but they are different. For the first, my scary-crazy IDC, I had lumpectomies, chemo, rads and five years of Tamoxifen. For my DCIS dx almost 10 years later, nipple-sparing BMX with immediate reconstruction w/saline implants and Alloderm. The treament for Round I was very scary, very debilitating, but I grew my hair back and returned to normal after about a year. The treatment for Round II was very scary - I endured my first major surgery ever, and my body is now forever altered. I will have new issues and SEs to deal with. Yes, my prognosis is great after dx #2, and there was no worry re mets as there was w/no. 1, but I don't love having implants and I'll be forever pissed (on some level) about having had to do this.

Sarah 

I agree that women with DCIS might be treated a bit differently than those with invasive cancers but I've chosen not to let it bother me.  That is why the DCIS board is here -- so we can offer each other information and support.  Even though we don't have invasive cancer and our prognosis is very  good we've still been treated for breast cancer; we've gone through surgeries, radiation, hormonal treatments -- everything except chemo.  More importantly, we've experienced the emotional pain that comes with being dx with BC.  I know that even after 4.5 years out of treatment, I'm still shaken about having DCIS.  I will never be the same.  For some reason, I just can't relax about it, even though I have enough information to know I have a very good prognosis compared to the others.

But everything is relative.  We have a cancer that can not kill us (at least not this time around), so we don't have to deal with worrying about it coming back at stage 4.   For me, I think I can take the tradeoff.

SAOIsenberg :  I think it was "different" for you because you were able to go the route of lumpectomy 1st out the door, but I ended up with a bi-lateral mastectomy on the recommendation of my doc's...  For true DCIS!  It is most certainly different... but it's like comparing Diabetes with someone who is losing their limbs to Diabetes - of course they wish they were in the early stages of Diabetes and not loosing their limbs but it is still Diabetes!  Cancer is always cancer, of course there are grades and stages but it's certainly relative.. I am almost 5 years out and I totally understand Sjack827's feeling of being forever changed and therefore certainly affected by cancer! 

But I also don't like the "in your face" negative comments we see here occassionally it's rare and yes that is why there is a DCIS board... My doc suggested I go to a "support group" after the surgeries and I have to say it was anything BUT support because many there were looking at their own mortality - not in the future but NOW... That certainly didn't mean I don't need a support group just that there wasn't anywhere for me in THAT support group... This one however was a lifesaver and I thank you all for that!!!

dragonfly55, you have a very wise and wonderful friend.  Come to think of it, you're pretty darned smart yourself.....thank you!

I did not mean to say that I do not/have not found support on these boards.  Unlikely I would get to 1000+ posts without support.  But, that does not mean that there are not some circle of people who treat women with DCIS differently.  When I was facing a mastectomy, I did go through someone (a woman who herself had gone through DCIS) tell me "A mastectomy?  No one gets a mastectomy for DCIS!  Its not even real cancer."  wow.  Still pains when I think about it.

In the aftermath of treatment that sort of attitude can at times make it hard sometimes, in my experience, to wander anywhere besides the DCIS boards.  Sadly this is when many women continue to need support.

My opinion is that there are terrific people in the world, and some of them happen to be BC survivors. There are also rude people in the world, and some of them happen to be BC survivors. 

It may be that some stage III and IV women are dismissive of DCIS women, but rather than classifying the dismissive folks by their disease, I think it's just as logical to assume that they're simply dismissive by nature.  

I think it is all scary and basically sucks! I hope we can all just get along and support each other. It is my wish that nobody would have to go through any stage. We all have our fears and all have to deal with crap with this disease. Funny thing is I have dcis with my invasive tumor, and I am so uneducated about dcis! There are so many questions I have about it. My doc said my invasive cancer did not come from the dcis, it was separate. ?

We all have our lives put on hold,suffer thru surgeries and have to make major,life-changing decisions never knowing if it will be the right one. So why are dcis people resented??? I feel on some forums there's a disinterest in dcis. Even amongst some dcis people. Almost as if you're not suffering enough for them to let you in. That's just my experience w/some of these forums but i've met some very nice people as well. Do we really all have to out-do each other w/scars and who suffers the most? Cancer sucks,nobody gets off easy. Not even dcis'ers.

I do think that there are rude comments posted from time to time. But I also think that the Tamoxifen & other treatments have left me overly sensitive. I've gotten barked at, or so it seems. So hard for me to know how my written words will be precieved by others.  Sometimes when I see rudeness on the boards, I think it's probably related to the authors treatments/medications or frustration/situation. Anyway, I have the BMX battle scars also. My IDC treatment is similar to DCIS, I believe. BMX, RADs, Tamoxifen.

There was also a stage1, grade 1 thread awhile back where the feeling was, "I didn't do chemo" do I really belong here.

Nope, not enemies! I'm actually a tad bit jealous that mine wasn't caught at the DCIS stage.

I would think that anyone who receives a diagnosis of bc should be treated with the utmost respect, and their concerns addressed the same, regardless of their type of cancer.

In business my job was to deal with people and their concerns.  I learned early on that a person's concern, while it may seem insignificant to me, was of vital importance to them.  How I responded to that concern made a difference in that person's life.  To respond in a negative fashion to someone expressing a genuine concern, is to send them away feeling depressed and less confident about their ability to handle the challenge.

 It is so much easier to give someone a positive word of encouragement, and causes no harm whatsoever. 

There are so many valuable "something to think about" type responses here. As mom3band1g said," ... I have very early stage breast cancer.". Anyone outside the BC circle don't know about the many types, stages, grades, receptors. They know you had/have BC and wish you a good recovery and hope it never comes back.



How grateful I am that my BC was caught early. How angry I feel when doctors haven't listened to their patients causing later diagnosis. How saddened I am that so many women are diagnosed with invasive cancers.... Mad and sad about the recurrences of BC.



I only see one enemy here:

BREAST CANCER