LCIS I am so confused!!

Yes, you are right about that!   Research would confirm that.

Marie

I'm sorry you are going through this too, Angie. I totally agree with MellissaDallas. When I looked at papers, about 20% (range something like 5% to 40%) of the women who were getting surgically excised after a core biopsy showed LCIS got a 'worse diagnosis' - e.g. DCIS or invasive breast cancer. For example, in this study, about 5% with concordant findings got  something worse, and 40% of the discordant.  Concordant means they found the LCIS in the same place as the 'lesion' in the mammogram that prompted the core biopsy.  I don't know how they exactly figure this out in something as floppy as a breast (at least my  breasts are floppy.)  http://www.ncbi.nlm.nih.gov/pubmed/23132235

http://www.ncbi.nlm.nih.gov/pubmed/22847126

Note lots of these studies have really low numbers of patients, so the numbers can be really small.  LCIS (with nothing worse) is about 7 x less frequent than DCIS.

If you have PLCIS (pleomorphic LCIS), then your odds may be a little worse - more importantly, PLCIS is much less common than classic LCIS, so the numbers are much lower than LCIS, so they know a lot LESS.    So, if you are like the people in the studies, your chances of having DCIS or LCIS are about the same as getting a breast cancer diagnosis in a core biopsy. 

As MelissaDallas said, its really good to talk to your breast surgeon.

Hello Everyone,

Well - had the first 6 mo f/u breast MRI and exam Friday and Monday - unfortunately did not receive the clean report I had hoped for .  Lft breast clean but right breast showing 3 areas of concern - one lesion with medium plateau enhancement curve (71%) and another with rapid washout enhancement curve (120%).  Bi-rad rated as category VI...but BS is speaking with radiogist to ammend to 5 or 4...doesn't really matter as now am scheduled for biopsies of the areas on Thursday.  Ugh!  I am trying to take deep breaths - but after researching the kinetics r/t the breast MRI interpretation, not feeling so optimistic.  I wish I had better news to share - but would truly appreciate your thoughts and prayers this week...it is helpful just knowing that you all are out there as a support group. 

Hi Melissa - yes - I am still taking the Tamoxifen and tolerating fairly well.  All three areas of concern are in the same breast that I had biopsied 6 months ago.  For that go-round the troubled area was identified on a mammo - and this go round is the first time I have had a breast MRI, so it is picking up areas of concern that were not visible on x-ray imaging.  The initial area of LCIS was at 1 o'clock and these areas are at 12 o'clock and 10 o'clock.  I am grateful to be on the biopsy schedule this week - I hate waiting and also just want to KNOW and DO!  Think I might have to alter that approach now that I'm in this arena.  Thanks for your support and will let everyone know when I know something....just very worried about the area of "rapid washout" enhancement curve....deep breaths and one step at a time....

ED----sorry to hear about the new findings on MRI. I'm praying it is just benign "stuff" or just more LCIS and nothing more serious. MRIs are known to pick up everything, so try not to get too worked up about it. (easier said than done I know; I had some "spots" show up on MRI years ago that radiologists felt were nothing and have not turned into anything). Let us know how it goes, we're here for you.

Anne

Well - the biopsy procedure went well and my BS thinks he got what he needed from the two areas of most concern. Felt pretty good until the lidocaine wore off...and WOW! All I can say is that two different sites in one breast definitely are causing me to be careful and keep the Tylenol and ice pack nearby! Did have some moderate bleeding from one of the sites last nite despite ace wrap pressure bandaging- but thank goodness managed to get it under control without having to go back to the MD. Now comes the wait for the path results...may not receive until M or T next week. Ugh - the waiting part is just the pits! Hoping all of you have a good weekend. Liz

Hi ED---Just wanted to let you know my thoughts and prayers are with you.  I had a similar MRI report 2 years ago.....rapid uptake and washout.  The research on these types of lesions scared the bejesus out of me....and then the Radiologist drilled about 20 cores out of the "very small area"  I almost passed out on the way to get the report, and it came up clean.   Have Faith.  Be Strong....  and if you can't be strong, we will be right behind you holding you up!

Marie

i had it. I chose two have both breasts removed, it was a good thing being that the surgeon found other cancer cells in my breast....6 yrs clean now. stay away from alcohol being it is a big factor in getting breast cancer especially estrogen pos cancer.  why take a chance

Sue----how do they know the "something" on the left breast is stage 1? (did they biopsy it? curious if it was IDC or ILC). I was diagnosed back in 2003 and do high risk surveillance and preventative meds (took tamox and now take evista). Have you considered evista---it doesn't have the endometrial cancer risk that tamox does.

anne

sunny----I can't really answer your questions directly, as I didn't have ILC (I had lumpectomy and took tamox for LCIS and now take evista--tolerate both meds well), but I wanted to share my mom's experience.  She had ILC  and negative nodes many years ago; had lumpectomy, radiation and took tamox--she is now a survivor of over 27 years without any recurrences. No "treatment nightmares"; just a lot of fatigue during radiation, but aside from her mild lymphedema,  she has lived a very normal life all these years since.

Anne