New LCIS diagnosis

Ninany
Ninany Member Posts: 55
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

Hi,

So I just got my LCIS diagnosis after an excisional biopsy of my L breast because of ADH dx from a stereotactic core biopsy. They also found 2 new areas of ADH. My BS is sending me to a Medical Oncologist and wants me to come back in 3 months for bilateral Mammo and Sono. But he doesn't want me to have an MRI yet. I really think I need to have an MRI at this point since I also had a FNA on my R breast which was B9 but I have dense breasts and complex fibroadenomas and now I am convinced there is more stuff lurking. How do I get him to change his mind? He says probably in September we can revisit. But I want to know now! Also, I'm thinking of getting a second read on the path results and then maybe a 2nd BS consult. How do I go about this? I would approach a different hospital, right? I'm so confused and stressy.

Thanks for any advice.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    Ninany, where do you live? If there is an NCIS Cancer Center close to you that is where I would go. I'm going to one. They did an MRI before my excisional to make sure they didn't see anything else. So far I am doing fine on six-month alternating mri & mammogram. I also had genetic counseling & testing because both my Dad's mom & sister had colon cancer & I had a rare ovarian cancer. I can't take Tamoxifen or Evista because of a prior PE. They are now offering me Aromasin instead. I'm still thinking about it.



    Sorry you find yourself here. Your situation is not an emergency, so take plenty of time to decide how you want to proceed on 2nd opinion.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    Here's how to locate one



    http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

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  • Ninany
    Ninany Member Posts: 55
    edited July 2013

    Hi,

    I live in NYC, going to NYU Breast Cancer Center (NCI Center) so I think I'm getting good care. But I've been advised to get a second read on the path results at least bc LCIS could be DCIS. I could get another read at Sloan Kettering (also NCI) or should I send to Johns Hopkins? I wish I had had an MRI before excisional, now all I can think about is that they're missing something still lurking.

    Thanks for your advice.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    Either would be great.



    I don't hear of DCIS being misread as lobular. The e-cadherin staining rules that out. I'd be more concerned about having invasive lobular. Of course LCIS is a risk factor for both ductal & lobular cancer.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    In the grand scheme of things though the vast majority of women with LCIS don't develop anything else.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    Here's Johns Hopkins ask an expert board for LCIS



    http://www.hopkinsbreastcenter.org/services/ask_expert/lcis_-_lobular_carcinoma_in_situ/

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  • Ninany
    Ninany Member Posts: 55
    edited July 2013

    This was part of an article on LCIS, but I also read it somewhere else.

    Thanks for your input!





    LCIS versus DCIS

    LCIS may be confused with DCIS in the following situations:

    1. DCIS may extend into recognizable lobules and be mistaken for LCIS (also known

    as “cancerization of lobules”) (5, 6) and LCIS may involve extralobular ducts,

    mimicking DCIS (7).

    2. DCIS and LCIS may coexist in the same breast (8) and even in the same ductal-

    lobular unit (9).

    3. In situ carcinomas may display ambiguous cytologic and/or architectural features

    which deviate from the usual patterns, making it difficult to determine if these proliferations are lobular or ductal in nature (i.e. carcinomas in situ with indeterminate features).

    Although the first two situations rarely cause difficulties for pathologists, the third

    category of histologically ambiguous in-situ lesions provides both diagnostic and management challenges. There has been much discussion regarding the classification and treatment of such equivocal in situ carcinomas, with some authors proposing a combined or mixed ductal and lobular category (10), and others favoring categorization as one type or the other (11-15). Analysis of genetic and immunophenotypic characteristics of these histologically ambiguous in situ carcinomas, in comparison to unambiguous cases of LCIS and DCIS should provide useful information toward defining their biologic nature and assisting in their categorization.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    Interesting.

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  • adedf659
    adedf659 Member Posts: 2
    edited July 2013

    I was diagnosed with LCIS over a year ago and am on the six month alternating mammo & ultrasound schedule. I've decided against tamox for now. Like most people, I initially freaked out, especially given the relative rarity of LCIS occurence (I've read the stats are 2.8 per 100,000 women). Then when I started searching the internet for others with LCIS, I really became worried because so many seemed to be in a state of hyper-reaction. Obviously, I understand the seriousness of BRCA1/2 and other gene mutations that increase your risk to what you may see as an unacceptable level that requires intervention. I haven't been tested and don't know if I will despite having an uncle and cousin who have the BRCA1 mutation and have had cancer. Please don't panic and rush - LCIS increases our odds over the next 20-30 years (1.66% per year is what I've read). Also read a little about relative risk (the scary stats that are normally used in the medical community) and absolute risk (the odds you're used ti thinking about in everyday life). With the advantage of time, I have calmed myself into living with this diagnosis from the perspective of it helping me number my days and live the best life I can while I can. None of us knows the future and all we can do is what seems a best choice for us. Do what you need for peace of mind certainly, but also let your emotions and reason merge and settle before making life-altering decisions.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    Thank you for posting that Aded. I agree with you about overreacting at first. I have calmed down a lot & will just continue to get my screenings.

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  • auntiems3
    auntiems3 Member Posts: 67
    edited July 2013

    Ninany,  if you are looking for a second op, Dr. David Page is one of the leading researchers of LCIS.  My breast Onc had no problem sending my path reports ( I come from a small town) to Dr Page at Vanderbilt.  And he personally concurred.  As did my 3rd opinion at Penn Medicine.

    Best, Marie

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  • Ninany
    Ninany Member Posts: 55
    edited July 2013

    Thanks auntieems3, I sent the slides to Memorial Sloan Kettering for a second opinion. I should have the results in a couple of weeks. Meanwhile, I just met with my Medical Oncologist who is super warm and empathetic. So, I feel like I'm in good hands for now. I also am switching to a new Gyn bc of endometriosis issues, which interferes with being able to take Tamoxifen, so a lot of firsts for me. But I really appreciate your advice and will keep Dr Page's info in case I need another opinion down the road.

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