Trying to absorb & figure out next steps-LCIS

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ChristyJ
ChristyJ Member Posts: 54
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I'm sure my story is similar to others in what a whirlwind couple of weeks it's been.  A routine mammo turned into diagnostic films and ultrasounds, then an attempted ultrasound-guided needle biopsy, and finally a surgical biopsy (a 1 cm mass & calcifications were deep in my left breast, close to my chest wall and a sample couldn't be obtained easily).  I've been getting mammos for the past 12 years, since my mother had been diagnosed with breast cancer in 2002, and this was my first experience with anything showing up.  I'm 44, and my mom was 55 when she was diagnosed.  She did the genetic testing and was negative.  I have not had the genetic testing at this point (I have two teenage daughters, so I'm wondering if I should).

I found out my results yesterday morning.  My mass was benign-hurray!  Then my doctor says "but."  But?!  But... there are some other findings we need to discuss.  Within the tissue they collected there was a 2mm area where they found LCIS.  He wants me to have MRIs of both breasts in about a month once my left breast has had time to heal, and from there I'd meet with an oncologist to discuss going on hormone-preventing meds (from what I've read it would be tamoxifin, right?).  I have an appointment on Monday to meet with another breast surgeon (she's my mom's surgeon and is regarded as the top BS in our area) to get a second opinion in moving forward.

Any advice in these initial steps of what I should be asking, what's most important to find out, etc?  I'm trying to get a clear head to best take on this new challenge.  Thanks.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2014

    Christy - So sorry for the unsettling news. Unless there is some really scary stuff on your dad's side, there is probably no need for you to get the BRCA mutation testing since your mom is negative. I generally believe one should consider how well their breasts image when considering the next step. It sounds like yours image relatively well. It still would be useful to know what your breast density rating is. When I was diagnosed with ADH and ALH I felt fortunate that they found it incidentally. BTW - I am on Tamoxifen and it is not a problem. I wish someone had suggested it to me ten years ago.

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2014

    Christy, the best news about LCIS is that you can take the time you need to do the homework you've already started, listen to and think about that second opinion, etc.  If you have the patience to read through older threads in this forum, some of the women here have developed considerable expertise regarding LCIS and take the time to share their knowledge with detailed, well written posts. You will ask very good questions on Monday if you are able to take time to read through the forum yet this weekend.  

    Good luck to you!  I had a similar finding, in both breasts, also BRCA negative and with a very extensive family history of BC. I opted for prophylactic bmx, but there are many good ways to take advantage of the 'heads up' that LCIS gives us. Surveillance, anti-hormonals, surgery...lots of choices, which is not generally what we can say about our sisters who find they have a BC diagnosis.  

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  • ChristyJ
    ChristyJ Member Posts: 54
    edited March 2014

    I have dense breasts, but I have no idea what the density rating is.  That's something I'll try to find out.
    Thank you both for the information.  There's much to think about, and I'll definitely be spending some time reading tomorrow (and for quite a while, I imagine).

    My breast surgeon said the tamoxifen could put me into early menopause.  I have worries about that.  And this might be TMI (but it also seems to be a good place to find out information about  all of the various aspects, so I'm going to voice concerns), but I have a very healthy sexual relationship with my husband, and I worry that the meds could affect that.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    Christy, one thing to know right off is that the vast majority of women with LCIS do NOT go on to develop breast cancer.

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

    Christy-----I was diagnosed with LCIS over 10 years ago and my risk is further elevated by family history of bc (my mom had ILC many years ago--lumpectomy, radiation, tamoxifen and is a survivor of over 27 years now); at time of diagnosis, oncologist gave me an estimated lifetime risk of 36.6%, and a 5-year risk of 4.6%. Even with that combination, all my docs felt bilat mastectomies too drastic and not medically necessary.  I opted to take tamoxifen for 5 years and now I take evista for further prevention; I continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. I tolerate both meds well overall and haven't needed any further biopsies in all these years.  Tamoxifen does have some SEs that might mimic some menopausal SEs, but it does not "put you into early menopause"; (Thinking back, I had minimal daily SEs from the tamox; my SEs came from ovarian surgery which actually put me into immediate menopause!) So I would recommend a yearly transvaginal US to monitor both the uterine lining and the ovaries, if you do go on tamox.  It's a good idea to sit down with your oncologist and try to get an idea of your overall risk level from the LCIS, and to discuss the pros and cons of  tamoxifen for your individual situation. As others have said, there is no rush with LCIS, as it is non-invasive. You can take whatever time you need to research, ask questions, get opinions, or to just let it all sink in. I chose not to go the route of bilat masts, but I would always reconsider that option if anything more serious were to show up. Only you can decide what is the right path for you.

    Anne

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  • leaf
    leaf Member Posts: 8,188
    edited March 2014

    Re: your chance of getting breast cancer.   I am not trying to presume what your caregiver will tell you about your lifetime chances of getting breast cancer, but when (s)he gives you the number, it would be a very relevant question to ask how well they know that number. 

    IMHO, the subject of breast cancer risk estimation, particularly for LCIS women, is in its infancy.  

    www.ncbi.nlm.nih.gov/pubmed/17...
    (Follow the link  to
    get a free copy of the paper.) It examines the Gail model, which is
    probably the most commonly used breast cancer risk model (for example at
    www.cancer.gov/bcrisktool/).&n... The Gail model specifically excludes women
    who have a history of having LCIS, DCIS, or breast cancer, so it
    wouldn't apply to LCIS women. Note the Gail model specifically says that
    it should NOT be used for making treatment decisions. www.cancer.gov/bcrisktool/
    Why? They found that the Gail model prediction for breast cancer *for
    this 'average' individual* is 'better than the toss of a coin - but
    not by much'. The only risk factor that they said may be
    predictive for an individual are risk factors as large as a deleterious
    BRCA mutation. (A deleterious BRCA mutation can cause a lifetime breast
    cancer risk of up to about 90-95%.)  

    If they are that uncertain about breast cancer prediction in the *average* woman, you can imagine how good it is to predict breast cancer in an individual LCIS woman.

    ____________________________

    Re: breast density.  Bottom line: its not as big a factor as you might imagine.

    Apparently, breast density can/is reported on many mammogram reports.   I asked my radiologist, and he said I have dense, but not extremely dense breasts (category 3.) According to this radiologist, a patient can estimate their own breast density if they have access to their mammogram, but I would be doubtful I would be objective enough.   http://www.halls.md/breast/density.htm However, if you click on each category, there are examples of different breast densities.

    (NOTE NOTE NOTE:  I would *not* use this Dr. Halls' breast cancer estimator, *particularly* if you have LCIS, unless you want to risk an unnecessary heart attack.   My onc gave me about a 30-40% lifetime risk; an NCI 2nd opinion gave me a '10-60% risk', and this Halls' breast calculator gave me up to ~90% risk (without tamoxifen). Halls' risk calculator was based on a paper for LCIS, but the results were not compared to an actual LCIS population, nor has it been peer-reviewed.  This is important.)  Since LCIS is a rather unusual condition (this study estimated the incidence as <3/100,000 http://www.ncbi.nlm.nih.gov/pubmed/23846782 ), I am not going to hold my breath waiting for the information, since few people are affected.)

    Thanks to the ever-wonderful Beesie, this is perhaps a more balanced website about breast density.  The categories are 1,2,3 and 4. http://www.breastdensity.info/index.html

     Note that in this .pdf from that  breastdensity.info site, it shows that some 80% of the female population has category 2 or 3.   http://jnci.oxfordjournals.org/content/99/5/386/T...

    In this study, it found that breast density (increasing the risk in category 1 to category 4)  increased the actual rate of breast cancer from about 4 per 1000 women to about 12 per 1000 women. Though that's a big % increase, you can see its not a big actual increase.  http://jnci.oxfordjournals.org/content/99/5/386/T... 

    As is attributed to Mark Twain, 'There are lies, damn lies, and statistics...'

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  • ChristyJ
    ChristyJ Member Posts: 54
    edited March 2014

    Thanks all.

    I met with another breast surgeon yesterday who's considered the best in our area.  The appt. was supposed to be my consult appt for my biopsy surgery, but I couldn't wait an entire month without going crazy... the con of sticking with her (availability is more difficult & the location is more of a pain to get to).  I liked her though.  She's been my Mom's surgeon (mom had breast cancer in 2002 and is doing well).  She's frank, but personable.  She didn't feel that I needed the MRIs.  The sample of tissue that contained LCIS was 2 mm in size.  She wants to get the slides and have them evaluated at the hospital she's out of, and if they concur with the LCIS DX, she'll have me see an oncologist.  She recommended Tamoxifen as well.

    Now I need to decide which surgeon to stick with, but will give myself a break about stressing about it until after I hear about the second slide analysis.

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

    sounds like she is very thorough, good you are getting a 2nd opinion on the slides (and possibly the diagnosis); best to wait on any MRI and see what the results are of the recheck of the slides. (having an MRI so soon after your biopsy could be an issue anyway---I would wait longer than a month, possibly 2 or 3 months even, as it will show a lot of "post-op changes" and may not be an accurate picture.

    anne

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  • ChristyJ
    ChristyJ Member Posts: 54
    edited March 2014

    Thanks, Anne.  I'm glad they are taking another look at the slides too.

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  • ChristyJ
    ChristyJ Member Posts: 54
    edited March 2014

    I got a call yesterday that the surgeon's office made an appointment for me to see an oncologist... and it's today!  I wasn't prepared-thought I had a few months before this step, so it REALLY caught me off guard.  I hung up my phone and sobbed quiet tears in my cubical at work for a few minutes.

    My husband is coming with me, and I've decided that I'm not starting anything today, although I'm not sure that would even happen.

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