Just diagnosed with LCIS

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  • msippiqueen
    msippiqueen Member Posts: 191
    edited June 2012

    Oops, the clarifying point.



    Yes, SOME LCIS is baby ILC, so to speak.



    MOST LCIS is not going to invade, thus becoming ILC. Again, most LCIS will not invade.



    The followup recommendations for monitoring after the LCIS diagnosis is in part to catch LCIS that has the capability to escape the basement membrane of the lobule, and catch it early, as then it is an invasive lobular cancer. Monitoring also is done to catch a potential DCIS or IDC. LCIS signals an increased possibility of other breast cancer occurring, in either breast This fact alone sets LCIS apart from any other breast cancer.



    Additionally, a good physician will tailor recommendations for monitoring however she feels it necessary and prudent, based on a woman's particular diagnoses and in view of other factors and considerations. Your doctor wants to know what you think and why. They want to help.



    There is so much to discuss about the mysterious LCIS.







    I hope this helps.









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  • dobie
    dobie Member Posts: 424
    edited June 2012

    Indeed, msippiqueen. Not always, but most of the time. Fare thee well.

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  • annievan
    annievan Member Posts: 92
    edited November 2012

    Well, just want to say that "Shirley" is no friend of mine!  She's a confusing little witch and is messing with my life right now - -

     I am glad that I met her though, as she's put me on high alert for her hateful and destructive buddies.  I am trying to put a plan in place (again) to get rid of her and her nasty friends forever.

    Hey -  Thanks for the calls for civility - - We all have enough to worry about without plowing through the muck-

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  • ---faithhopelove---
    ---faithhopelove--- Member Posts: 25
    edited September 2012

    Hi Everyone!

    I haven't posted in awhile and all has been well.  My joint pain with tamoxifen went away after the first month.  Now, my 80 year old father has been diagnosed with breast cancer!  Pappillary cancer of the breast.  It is very rare but very treatable. He had surgery to remove the lump and the reports came back a little was found in lymph nodes.  So far, they are only recommending tamoxifen for him.  So here we both are, father and daughter on tamoxifen!  Now they are recommending genetic testing for me.  By the way, my aunt, my father's sister had breast cancer. She got test the BRCA gene test and it was negative.  I go in on Thursday for my test.  I'm not even sure what I want to ask all of you.  I have LCIS. Just any advice or knowledge you might want to share with me would be appreciated.  Hope all are well. 

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  • Fussykat08
    Fussykat08 Member Posts: 8
    edited November 2014

    Hi Doreenanne,

    I appreciate your candidness and your posts. I went in for a breast reduction two weeks ago due to extreme neck and shoulder problems for 20 plus years. I have very dense breasts have had two MRIs that came back fine. Went in for my postop appointment this week and then the pathology report came back with LCIS! I have been an absolute wreck all week. Researching what to do, I saw a breast surgeon and she recommended tamoxifen for five years and every six-month monitoring with mammograms and MRIs! Taxing that drug literally scares me to death! She thought a PBM was to aggressive and wouldn't hear of it. So, do I risk all the nasty side effects of tamoxifen and possibly get another type of cancer?

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

    Fussykat-----I was diagnosed with LCIS over 11 years ago (and also have family history of bc, my mom had ILC). I have been doing close surveillance of alternating mammos and MRIs every 6 months, I took tamoxifen for 5 years and now evista for 5 years. Fortunately, I have tolerated both meds with very minimal SEs. The risk of serious SEs from tamox are reportedly very, very low, <1% for blood clots and endometrial cancer; most just report hot flashes. I would recommend a yearly transvaginal US to monitor both the ovaries and the endometrial lining, if you do take tamox.


    anne

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  • ---faithhopelove---
    ---faithhopelove--- Member Posts: 25
    edited March 2019

    Hi Everyone! I'm back. 9 years after being diagnosed with LCIS. I completed five years of tamoxifen and have been doing twice a year mammographies and occasional MRI's. I just got word that my MRI from yesterday showed linear enhancements 2.5 cm. I need to go for a MRI guided biopsy. Can anyone give me advice, courage and insight. Feeling scared all over again. Thank you so much.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited March 2019

    In general 80%-85% of biopsies are not cancerous, which you likely know, faithopelove.

    Here's another bit of positive news from this April 15, 2015 study located at

    https://pubs.rsna.org/doi/full/10.1148/radiol.2015...

    Two Distinct Types of Linear Distribution in Nonmass Enhancement at Breast MR Imaging: Difference in Positive Predictive Value between Linear and Branching Patterns



    One of the two purposes of this study was: "To compare positive predictive values (PPVs) of linearly distributed nonmass enhancement (NME) with linear and branching patterns"

    Some of the results were:

    "The branching pattern was a significantly stronger predictor of malignancy than was the linear pattern"


    I can understand your scared feeling. Please post on your results if you wish and how this experience has informed you in your choices and decisions going forward. Good luck to you.




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  • ---faithhopelove---
    ---faithhopelove--- Member Posts: 25
    edited March 2019

    Thank you so much Lea7777! I'm trying to be hopeful. I really appreciate you forwarding that article and will definitely post my results.

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  • pegasus68
    pegasus68 Member Posts: 73
    edited March 2019

    faithopelove: If it helps - I was diagnosed with LCIS 5 years ago and alternate 3D mammo with MRI every six months for high-risk surveillance. My last MRI showed 2cm of clumped linear nonmass enhancement leading to the nipple. Fortunately, my biopsy came back benign - duct ectasia and stromal fibrosis - but boy was I stressed until I got the results. I truly hope your results are benign too! Do let us know how it goes, and know that we are thinking about you!

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  • Lea7777
    Lea7777 Member Posts: 274
    edited March 2019

    Your situation was very similar, @Pegasus68. It turned out well for you and hopefully will turn out equally well for faithopelove.

    One other question for @faithopelove, was there a Birads # on your MRI report? That number could also shed light on your situation.

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  • ---faithhopelove---
    ---faithhopelove--- Member Posts: 25
    edited March 2019

    I did not see a report just a phone call. Then yesterday when I called for more information she did mention segmented. I’m so tired of tests and call backs, results and follow ups. The amount of worry we all deal with is insane. My biopsy is next Thursday and 3-5 days later I will hear. So next two weeks please keep me in your prayers. @pegasus68 thanks for sharing your results, I hope for me too!

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  • Lea7777
    Lea7777 Member Posts: 274
    edited March 2019

    The waiting is the worst, @faithopelove. If you don't hear by day 3, start calling. That is a long time for results. Best of luck on Thursday and hoping that 10 days from now, you can put all worry behind you.


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