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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    Roswell--definitely "been there, done that"! I was diagnosed with LCIS coming up on 8 years now; I also have family history of bc (mom had ILC) which further elevates my risk. I took tamoxifen for 5 years, now take evista , and continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. Not a choice everyone would be comfortable with, but it works for me. That's the thing with LCIS----you have to decide what YOU will be comfortable doing for the long term. There are pros and cons of both  close monitoring / meds and BPMs. Feel free to PM me if you'd like to talk.

    Anne 

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  • Doreenanne
    Doreenanne Member Posts: 36
    edited June 2011

    Kelly:  I'm sending happy vibes your way!!!  I go for my last fill next week.  Then my exchange.

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  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited June 2011

    thank you so much doreenanne!

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  • missray
    missray Member Posts: 4
    edited June 2011

    This LCIS diagnosis is so vague it's hard to know what to do.  I was just diagnosed a month ago after having  2 biopsies.  The surgeon wants a close surveillance and placed me on Evista.  Went for another opinion and was offered 4 suggestions:

    1. Do yearly mammo

    2. Mammo every 6 months

    3. MRI breast exam with biopsy

    4. Mastectomy

    I have a strong family history of BC and really don't think I can handle waiting to get invasive BC.

    Big decision.........

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    missray----the reason it is a good idea to alternate the mammos and the MRIs (every 6 months) is that each images the breast in a different way, so what one test misses, another may catch. That's the way I look at it, anyway! Nothing (MRI, US, mammo, or any other diagnostic) is 100% accurate. Even with PBMs there is no guarantee, since they can't get all the breast tissue. (your risk is significantly decreased, but not to zero).

    Anne 

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  • Roswell4
    Roswell4 Member Posts: 6
    edited July 2011

    Thanks, Anne.  I started the Tamoxifen on June 18, and so far have been doing well.  A couple very minor SE's this week, nothing I can't deal with.  My main concern is - I get my BRCA results on Monday.  Very nervous about that.  I have LCIS, and a family history of BC, so my ONC wanted me tested.  I do want to know, but am scared to find out!  It's going to be a long weekend!  IF I am positive, my ONC said we would need to discontinue the Tamox and start talking preventative surgery.  Really hoping to avoid that, at least at this point.  It's in God's hands, I just have to wait to see what happens next.

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  • vmudrow
    vmudrow Member Posts: 846
    edited July 2011

    Hi,

    I'm Valerie - age 50 :(   I live in Utah and was diagnoised in January 2010 with ALH.  Decided to have PBMX in May 2010 - have been very happy with the results.  I play tennis on a 4.5 team. Three kids, two boys 28 (getting married in June), 26 and a 22 year old daughter. 

    Hope you ladies that had surgery are all doing ok - let us know!

    Hugs, Valerie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Roswell---just posted to you in another thread.  My oncologist and I have discussed genetic testing many times over the years, but I don't have any of the "red flags" for BRCA+, so he feels I am very low risk for it.  I already lost my ovaries anyway (not by choice---ruptured) so one less thing to worry about! I almost had the testing 1.5 years ago--got all geared up to do it, then insurance changed and I had to cancel appt. Haven't decided if I want to go thru the approval process again. I'm not interested in going the route of PBMs at this point in time, even with my  high risk I already know about (I do high risk surveillance and preventative meds)---if I was BRCA+, I would do bilat masts. Feel free to PM me if you'd like.

    anne 

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  • lciscarroll
    lciscarroll Member Posts: 91
    edited July 2011

    Hi everyone, my name is Laurie.  Original diagnosis ALH after needle biopsy 4 / 2010.  Subsequent surgical biopsy showed LCIS.  Surgery did not go well resulted in hematoma and emergency trip to hospital with overnight stay.  9/ 2010,  6 months later, more calcifications showed on mammogram.  Repeat surgical biopsy, again showed LCIS.  MRI negative.   Had PBMX with immediate nipple sparring reconstruction 12 / 2010 and 3 / 2010.  I am so happy with my results.  Do not miss my old breasts at all.

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