Bilateral mastectomy LCIS, DCIS Grade 3

I dont have lots of answers for you, but I understand your worries.  I was dx with DCIS and was tested for BRACA because of family history (not as extreme as yours, but enough to make me worry).  BRACA was negative! (even though I was pretty sure it would positive).  I decided on a BMX -- one side was no choice because the DCIS was very wide spread, but the other side was preventative.  I was very worried that they would find something invasive in one of the sides once they were in there.  Good news was they didnt.  So, I just wanted to assure you that it may stay as is -- Stage 0, noninvasive.  You will read plenty of stories where people went into surgery at one stage and come out a worse stage.  I know I did, and it terrified me.  But, I wanted you to know there are stories, like mine, where I went in Stage 0 and came out Stage 0.  Hope that helps alittle. 

Being dx is so scary, and the unknown is terrifying...but I read on this board, something like, "Dont go there until/unless you have to go there."  I clinged to that and tried to keep myself from worrying to much...With DCIS there is still a good chance that this will be noninvasive.

Hang in there!  And these boards gave me great advice to prep for surgery.  You will get good information and good support here.

Hi Tinanicu,

I have no scientific basis for saying this, but when you wondered if the LCIS caused mastitis, I think the other way around.  Since cancer can be related to inflammation, it's possible that the frequent mastitis in some way played a role in generating or facilitating the development of the DCIS/LCIS.  I had mastitis and then had multiple biopsies of that same breast, first for atypical ductal hyperplasia, a pre-cancerous condition, and then DCIS.  Best of luck to you.  I hope they find nothing invasive, and got it all in time.

Well I also hope you don't have invasion.  Usually, if the area(s) are small, then invasion is less likely.  Hopefully the odds are in your favor this time around.  You deserve it! 

Hi, I wouldn't say that LCIS is much less cared about. ILC from what I have read is a very sneaky invasive cancer that can hide from mammograms.

A little background on my DCIS: I had a greenish non-spontaneous discharge from certain nipple holes in 2007. My primary doctor couldn't get the discharge to come out. She always beleives me so she sent me for a mammogram then to what I think what a breast surgeon. The breast surgeon was nothing but humiliating. I explained that the discharge was only emitted when the breast was squeezed during sex. He said my mammogram was fine, and that I should just have my boyfriend stop doing that. That was it. I was too timid back then to show them how to get it to come out.

Fastforward to August 2010...the greenish discharge turned bloody. I didn't bother calling the doctor because no one believed me back in 2007 (I am NOT the timid anymore since cancer). In October 2010, I found a lump while massaging myself (I was sore from lifting and carrying a bucket of rocks earlier that day). Turns out it was DCIS. I KNOW it was the same milk ducts the green discharge from 2007 because the bloody discharge was from the same nipple holes and the lump was on the same side of the breast that corresponds to the nipple holes.

So I figure it took around 3 years to develop into cancer. My lump had DCIS, grade 1 and ADH in it.