LCIS I am so confused!!

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  • arc12
    arc12 Member Posts: 13
    edited January 2013

    Thank you so so much! That helps me understand much better! I really appreciate your knowledge and compassion.

    God go with you.......

    Angie

  • auntiems3
    auntiems3 Member Posts: 67
    edited February 2013

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

    Marie

  • ED2012
    ED2012 Member Posts: 97
    edited February 2013

    Hi Angie,

    MelissaDall...gave you sound advice.  Everything that I have read indicates that it is standard practice when LCIS is found - to do a wide exisional biopsy to ensure that there isn't anything else lurking in or around the area.  How scary that even after all the screening tests - that these areas can still be there and we don't know it.    I can appreciate the financial aspects of yet another biopsy - but invasive cancer and the interventions required can ultimately add up to a total cost that would WAY exceed the cost of a biopsy.

    I am sorry you are going through this.  Your doc is wise to make certain they have found everything that needs to be found.  If you get through all of this without an invasive dx...then treat yourself to one heck of a vacation!!

  • leaf
    leaf Member Posts: 8,188
    edited February 2013

    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.

  • 123penelope
    123penelope Member Posts: 42
    edited February 2013

    My last mammo was Dec. 2012, was normal. Back in 2011 microcalifications were found, then a stereotactic core needle biopsy, then a surgical excisional biopsy with wire localization.

  • ED2012
    ED2012 Member Posts: 97
    edited February 2013

    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. 

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2013

    ED2012,



    Sorry about the MRI. what a bummer! I know you've worked hard on lifestyle changes too. Are you still taking the antihormonal? Which of the findings were in the breast you had biopsied six months ago.?



    At least the good thing is you don't have much time to stew over it before biopsy. You know that MRIs produce so many false alarms, so take a deep breath and lay off Dr. Google for a while. I'll be pulling for you receiving better news after the biopsy.



    Doesn't this all just suck? I hate that this is all so wishy-washy instead of something they just DO something about. Then I look at women like AWD who haven't had to have repeated biopsies and has been stable for years. Such a crap-shoot!

  • ED2012
    ED2012 Member Posts: 97
    edited February 2013

    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....

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2013

    Ah, I see. I didn't realize you hadn't had an MRI before, so you're right, probably nothing new there. Since this junk tends to be diffusely through both breasts hopefully it is just more of the same old same old.



    I'm glad they went ahead and did an MRI before my excisional last year. When I go for the next one 04/01 at least they'll have something to compare it to.



    The sclerosing adenosis on me looked very suspicious but turned out to be no big deal.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    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

  • ED2012
    ED2012 Member Posts: 97
    edited February 2013

    Thanks for the support and prayers - I admit that I am scared, but am also trying to remember the statistics that may run in my favor and be strong.  I will let you all know when I hear back from pathology - probably won't be until Monday next week since biopsy is tomorrow. Regards to all, Liz

  • ED2012
    ED2012 Member Posts: 97
    edited February 2013

    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

  • leaf
    leaf Member Posts: 8,188
    edited February 2013

    You are not alone - I needed the ice packs too.  Waiting is the pits!  Please know we are reaching out our hand to you and hoping it all comes out to be a big fat nothing!

  • auntiems3
    auntiems3 Member Posts: 67
    edited February 2013

    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

  • ED2012
    ED2012 Member Posts: 97
    edited February 2013

    Leaf and auntiems3,

    Thank you both for your thoughts, prayers and words of encouragement! It really does feel like a hug and that is something I really appreciate right now. I am trying to take plenty of deep breathes and be rationale about all of this - but it really does play with my head and the stress is immense. At least I am one day closer to hopefully getting results...will spend today going to visit with my middle son who turns 24 tomorrow...that should keep me busy with something positive today :).

  • tacotime
    tacotime Member Posts: 14
    edited February 2013

    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

  • SueCA
    SueCA Member Posts: 8
    edited November 2013


    I was diagnosed with LCIS in 2004 at Stage 0 and still is in Right breast.


    The Left breast has shown 'something' 4mm and stage 1 so getting scheduled for surgery.


    I am considering a BMX to be on the safe side. I am not young and don't really want to revisit this in a few more years.


    So far this is my decision but when I meet with the surgeon I will hear what she has to say. I cannot take Tamoxifen due to uterine lining thickness which is another thing to be explored with GYN.


    Thank you all for sharing your experiences. I will keep reading this thread.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    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

  • Sunny1012
    Sunny1012 Member Posts: 14
    edited February 2014

    hello all-- I was diagnosed with ILC in October 2013 and had a partial mastectomy ( lumpectomy) and sentinal node removal on jan 8, 2014.  My nodes were clear but the margins had LCIS.  My surgeon explained that LCIS is not cancer and is normally not treated.  It is a marker for being at risk for breast cancer both ILC and DCIS.  I am having to make decisions about radiation followed by tamoxifen because I did have ILC not because of the subsequent finding of LCIS.  I would appreciate any feedback from those who have done Tamoxifen and skipped radiation .  I am struggling with following the standard of care after reading research and communicating with survivors about the nightmares of their treatments.  I really don't want to do any treatments beyond the surgery and wonder if anyone chose that path as well and how you are doing.  Thank you

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    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

  • glorianna
    glorianna Member Posts: 92
    edited February 2014

    Hi,

    Thanks for all the input making us all aware of LCIS, that there are problems with it showing up on imaging etc.I

    There has been talk about risks, genes etc, family history for cancer.

    I have no family history of cancer, many died young. I will meet a gynecology oncology surgeon for ruptured ovarian tumour

    next week in Baltimore, at a large hospital there. So this gene testing, family history does not men anything in my case.

    take care.

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