Diagnosed yesterday with LCIS

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mahmee
mahmee Member Posts: 1
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I was diagnosed with LCIS yesterday afternoon and have been on an emotional roller coaster since then.  I have no family history of BC but have been going for biopsies,sterotatic, local, etc., you name; I've had it.  It seems that every six months something else pops up in my breast.  Four months ago I had a breast lift and upon a routine physical, a lump was felt in my left breast.  Long story short, LCIS, stage 0 and I am freaking out at times.  I have been reading a lot since yesterday and have learned one thing - LCIS is not the same for each woman.  Considering my history and two abnormal biopsies prior to diagnosis, I am thinking BMX.  I haven't seen am oncologist yet and have to schedule my MRI; but the thought of waiting for the "Other shoe to drop" is driving me crazy.  Did anyone feel the same way when diagnosed?  I appreciate any and all comments.

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  • leaf
    leaf Member Posts: 8,188
    edited May 2009

    For me, it took a long time to process all the information. 

    Did you have your LCIS site excised?  I think most people opt to get the area excised.

    There is a lot of controversy about treatment. If you count the number of LCIS women on this forum who have had/are thinking of having BPMs,  you may think that almost all LCIS women get bilateral mastectomies.  However, I doubt if that is true.  Our forum is not a representative sample of all the women with LCIS.

      My bs refuses to do any further surgery on me.  A major institution not only did NOT recommend BPMs for me, they also said it would not be helpful to have an MRI because of my extensive scar tissue. Most people post if they have an unusual or charged emotional issue.  The people that just go on with their lives often do not go on posting.

    This is a  statement by the NCI. "Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS."http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

    I had sonos every 3 times the first year, and 2 biopsies 1 year after my excision.  It seemed like a roller coaster. One ended up being scar tissue from the excision, inches away. But now, for me, things seem to have calmed down for me.  Currently I'm on tamoxifen.

      If you have a BRCA mutation or strong family history, then that may figure into your equation too.  (I got genetic counseling, not testing, after my excision, to estimate my chances of having a genetic factor.) Whether or not your insurance will cover can be another issue.

    So every person is different.  There is no right or wrong way. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    mahmee---I was diagnosed with LCIS in Sept 2003. Had lumpectomy, took tamoxifen for 5 years. I'm now on Evista for further preventation and am still on high risk surveillance--alternating mammos with MRIs every 6 months, breast exams on the opposite 6 month schedule. The thing with LCIS is that there is no rush--take your time to research, get 2nd opinions if you chose--always try to make your decisions out of knowledge, not fear. As Leaf pointed out, it seems like most with LCIS have PBMs, but actually that may not be the case. (others may just not post). I would suggest you wait until you  see the oncologist, have the MRI and see what the recommendations are then. Feel free to PM me if you'd like---I've been dealing with this for a long time and would like to help if I can with any questions.

    Anne

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  • CAZ
    CAZ Member Posts: 678
    edited May 2009

    Absolutely take your time to research what is best for you.  I opted for PBM because I could live with the scars more than I could live with the fear I had.  So many factors have to go into your decision.  See what your oncologist recommends.  I was happy with my second opinion at a comprehensive breast clinic.  In the end, do what is right for you.

    Carol(AZ)

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  • taraleec
    taraleec Member Posts: 236
    edited May 2009

    Hi mahmee,   I sent you a Private Message.

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited May 2009

    Mahmee,

    Like you I was freaking out when I found out my dx. After going to about 5 Dr's I chose a PBM for my LCIS and I'm glad I did. My BS and my PS did a fantastic job on me. No regrets here. It's a tough decision but it's doable. The surgery wasn't as bad as you think. Take your time and get all the info you can. You can send me a PM if you need to talk.

    Best of luck,

    Ann

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited May 2009

    Mahmee - As everyone above can attest to, there is no one size fits all answer to LCIS. Do your research and talk to your doctors and follow your gut. You will get to the best place for you. If you are in the US your insurance will pay for a prophylactic BMx. But you don't need to go there yet. Talk to your doctors and then make your decision. I am so sorry you are dealing w/ all this. Hugs. - Jean

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