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loriio
loriio Member Posts: 247
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

The excisional biopsy confirmed the stereotactic biopsy:  I do have extensive LCIS.   I don't have any more info-I meet with the BS next week.  I am glad I don't have cancer, but when my husband said, "that's great news" I thought, is it?  I still have this thing in my body that makes it more likely for me to get breast cancer.  How is that good news?  I'm just not sure what to feel, or what to do. I just feel...numb.  I guess that's the word.

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  • shabby6485
    shabby6485 Member Posts: 679
    edited March 2012

    hi loriio,

    i completely understand.  when the doctor said" it isn't cancer BUT....." I felt conflicted.  initially relieved then scared.  the one good thing with lcis is you are in no rush to make any decisions on how you want to deal with it.  so, i completely know how you feel... best of luck!

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  • mmswarowski
    mmswarowski Member Posts: 34
    edited March 2012

    Oh Loriio...I so totally get it! My doctor handed me the pathology report and I swear the only word I saw on was "CARCINOMA". He was talking and talking and all I saw was that word and all I heard was my blood pounding in my ears. I had never even heard of LCIS before that day! I felt all of those things..then I found this website and every question I had was answered by kind, fun and knowledgeable women who had been there before me.

    As Shabby says you are now in a good spot...we with LCIS have the luxury of time to figure out what is our best course of action. Good luck! We are always here for you!

    Maryellen

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Lorio----I had very similar feelings when I was diagnosed with LCIS over 8.5 years ago. (my risk is further elevated by my mom's  ILC).  I was kinda consumed by it all for quite a while, then decided i wasn't going to worry about it, because worry doesn't change anything. But I am proactive----I do high risk surveillance  (alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, so I'm very closely watched for any changes) and I take preventative meds  (took tamoxifen for 5 years and now take evista) that help to significantly decrease my risk of invasive bc.  I just got results back yesterday from another clear MRI; the meds obviously are working well for me.  This is a very personal choice I've made; we each have to make the choice which is right for our situation. So it is very good news that you don't have DCIS or any invasive bc; but you do have a very challenging high risk condition which does require a lot of vigilance. Feel free to PM me anytime if you want to talk. I understand all the feelings, I've had them all too!

    anne 

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  • Crescent5
    Crescent5 Member Posts: 442
    edited March 2012
    LCIS does make you feel numb. I hate the "no invasive but ...." I think you have to look at this as one heck of a great warning sign. Not many people get warned. This is the time to weed through the information and get plenty of dr's opinions. The odds are in your favor that you may never get invasive. However, you have this thing, and it has to be taken seriously.
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  • loriio
    loriio Member Posts: 247
    edited April 2012

    Before I begin, let me say that I really like my BS.  I have heard wonderful things about her and have also heard that she tends to be conservative when it comes to treatment and preventative measures.  I met with the BS yesterday and was a little surprised.  During my initial meeting with her after my stereotactic biopsy, I felt like she was steering me towards monitoring with an open mind to PBMX down the road if I start having a lot of biopsies.  It was a very general conversation because she wanted to wait to see the results of the excisional.  Apparently, I have extensive LCIS and highly dense breasts.  When I told her I was leaning towards monitoring, she told me in that case she wanted me to see a medical oncologist to talk about tamoxifin.  In my case, based on the pathology report, she doesn't think that just monitoring is a good idea.  They are referring me to a medical oncologist. However, due to my gynecological history,tamoxofin might not be a good choice for me.  My OB/GYN is being brought into the loop as well.  

    I asked her what her recommendation is and she said PBMX -and she usually doesn't like to go that route.  (which agrees with the info I got from a nurse friend of mine)  I don't feel pressured by her at all.  She spent about 30 minutes with me talking through everything.  She encouraged me to go see my family practice doctor and speak with her.  I am also being referred to a plastic surgeon about reconstruction.  I spoke with her about nipple sparing surgery, but she feels strongly that I'm not a candidate for it because of the extensiveness of the LCIS.  I am scheduled to go back to the BS in 2 months and hopefully I'll have reached a decision by then.  

     Thanks to everyone on this board for the support. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Loriio--I just sent you a PM. Evista is another possible choice (as long as you are post menopausal) if you can't take tamoxifen. but you can be monitored yearly with transvaginal US while on tamox (for the uterine lining and the ovaries).

    anne 

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  • skipper12
    skipper12 Member Posts: 6
    edited April 2012

    Lorrio, I have been reading the posts here on LCIS for a couple of weeks.  I am in the same boat as everyone here. I have been monitoring for over 3 years and each biopsy result showed extensive new LCIS areas.  I am now considering PBM and have been doing my research and came across this forum.  I now know I am not alone. It is a comfort.

    I did try Evista as I am post menopausal and it did not suit me.  I tried it for over six months and felt dizzy and out of sorts most of the time. 

    Good luck in reaching your decision on your care 

    Skipper 

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