LCIS

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barbs1011
barbs1011 Member Posts: 4
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I was diagnosed with LCIS after small calcifications were seen on a digital mammo. Age 63.  Had an extensive stereotactic biopsy by a wonderful and wise Radiologist MD,PHD, who has run the Sagoff Breast Center for 25 years.  He emphasized that LCIS is NOT cancer. His advise was close monitoring every 6 months. Second opinion was with a surgeon at MGH who wants to do excisional surgery.  My first biopsy was extensive and if this is not cancer, why more surgery? I have been reading on line for days and am no more convinced than when I began.  Medicine is business and more tests, surgeries etc...are they necessary?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Barb-----the reason for the excisional surgery after a finding of LCIS on stereotactic core biopsy is to make sure there is nothing more serious in there along with the LCIS (DCIS or invasive bc). I was diagnosed with LCIS 6.5 years ago by suspicious microcalcifications on mammo, had SCB (11 cores), then wide excisional lumpectomy which confirmed the diagnosis. I was given the 3 standard options: close monitoring, close monitoring with tamoxifen, or BPMs.  I saw an oncologist and started on tamoxifen a month later, which I took for 5 years and tolerated pretty well. I still continue with high risk surveillance of alternating mammos with MRIs every 6 months (MRI coming up this thursday), breast exams on the opposite 6 months, and now I take evista for further preventative measures. Not a choice that works for everyone (some choose BPMs), but it works for me. With LCIS comes a great deal of uncertainty and controversy. While it technically is a non-invasive  stage 0  in-situ bc, many in the medical community consider it only a marker for high risk of invasive bc in the future.  My doctors all consider it bc, just a non-invasive type, and treat it seriously (I also have family history of ILC which increases my risk even further).  It is generally found to be multifocal, multicentric and bilateral, meaning it is a disease that usually affects both breasts, but the risk is the same even if it is found in more than one spot. It basically boils down to what risk you can live with. I would recommend you have the excisional biopsy and then meet with an oncologist to go over all your risks and benefits. Praying you have nothing more serious found.

    Anne

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  • barbs1011
    barbs1011 Member Posts: 4
    edited March 2010

    thanks Anne, it is so nice to share..very comforting. 

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2010

    Barbs: You are right, LCIS is not cancer it is misnamed it's neoplasia. There is a good section on this web site that explains it.

    I was diagnosed with PILC and the path report noted extensive LCIS. I freaked out thinking it's still in there. I have been assured both by my new bs and onc that it does not need treatment and just warrants close monitoring.

    LCIS is often not diagnosed until an invasive cancer is diagnosed. It can sit in there for 20 years and nothing happens.

    Do read the section on this website under syptoms and diagnosis - it made me feel a lot better.

    Sue

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  • kitlyn
    kitlyn Member Posts: 1
    edited March 2010

    Barb, I think you are right to think about not having the surgery. I was diagnosed with LCIS and atypia hyperlasia 3 years ago and did have the surgery. Follow up mammograms found new calcifications every 6 months that they wanted to biopsy. I decided not to have the biopsies, as I could not imagine going through such an invasive procedure every 6 months and felt that my risk was low. Instead I opted for close screening (mammogram every 6 months and yearly MRI) and the areas have been stable. Since LCIS rarely develops into invasive cancer, I feel that the same thing could have been true for the area in which I had the surgery.



    This raised considerable concern and discussions with my surgeon and radiologist. Two years after my surgery I agreed to go on Tamoxifen as my body keeps forming these questionable calcification clusters and needless to say, they were worried. I am still weighing the benefits vs. the risks.



    There is a wonderful book called Breast Health The Wise Woman Way by herbalist Susun S. Weed. It is actually making me rethink the whole way in which the medical community deals with LCIS. Do we really need so many mammograms (which expose us to radiation that also increases risk)? And do the potential risks from taking tamoxifen outweigh the benefits?



    I think the answer lies in what makes you the most comfortable. If you don't have the surgery, will you constantly be worried or do you feel comfortable with screening every 6 months? When my surgeon tells me my lifetime risk of getting breast cancer is 25% I answer "Yes, but my chance of NOT getting breast cancer is 75%."

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  • barbs1011
    barbs1011 Member Posts: 4
    edited March 2010

    Hi,

    Just had my third opinion on LCIS and all agreed to watch closely.  The stereotactic was thorough and enough for sampling and pathology.  Any more biopsies would wound the breast even more.    These very experienced Physicians felt that LCIS is being treated to aggressively and they ALL reiterated that it is NOT cancer. Taking Tamoxofin has its own downside and when weighed, is not worth any more risk.  Could it be possible that some Docs are afraid of mal practice?

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