biopsies show more LCIS 7 years after PBMs

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Emma8
Emma8 Member Posts: 22
edited October 2014 in LCIS (Lobular Carcinoma In Situ)

Hi All,

7 years ago I was diagnosed with LCIS and pLCIS on biopsies and I opted for bilateral mastectomies with reconstruction.  My follow up has just been physical exams.  Last month, I decided to have a minor revision on both my breasts where I had a little loose skin, just for cosmetic perfectionism.  Well, the subcutaneous tissue removed with the excess breast skin was breast tissue containing classic LCIS on both sides.  I have consulted with several of the top experts in the field, surgeons and oncologists and they are divided on whether I should now go on Tamoxifen as it is hard to estimate my risk for invasive cancer.  I wonder if anyone out there has had a biopsy after the mastectomies that has shown anything like this and what they were told?

Thanks,

Emma

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

    Emma, you have certainly got my attention with this question.  I too had pbmx for the same reason. I know that prophy mx does not reduce our risk to zero, and your experience is an eye-opening reminder of that.  I had one post-recon MRI to map the landscape of my new breasts, but that method of periodic surveillance will not pick up LCIS.  I do hope you get some insights from the amazing women in this forum, to help you decide what to do. 

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

    I have not had a mx, so I was hesitant to reply.

    But most classic LCIS is multifocal (meaning it occurs in many spots in a breast) and is usually bilateral (in both breasts).  They know this because before about 1990, the routine treatment for (classic) LCIS was bilateral mastectomies, and they could look at the mastectomy specimens.

    So, I'm not surprised that they found more LCIS.  Since classic LCIS is not reliably found on any breast imaging, we don't know where it is without biopsying or removing it.  Since they can't remove all breast tissue in a mastectomy, I don't know of a way to determine if your newly discovered LCIS was there before you had your mastectomies, or if your newly discovered LCIS developed after you had your mastectomies.

    We don't know what causes LCIS or ILC or IDC. 

    So LCIS, especially classic LCIS, is difficult to study.  In this paper of women who had both LCIS and ILC found at the same time, about 14/24 of the women's LCIS was clonally related to their ILC, suggesting that perhaps some of their LCIS could develop into ILC. But this is just circumstantial evidence.

    http://www.ncbi.nlm.nih.gov/pubmed/15197797

    But in long term studies, most of the invasive breast cancer that LCIS patients got was invasive ductal carcinoma, not invasive lobular carcinoma.

    http://jco.ascopubs.org/content/23/24/5534.long

    So, assuming that ILC develops directly from LCIS, and that IDC does not (which are  big assumptions), there may be some other factor that caused your LCIS which can (not necessarily will) cause both ILC and IDC.


     They also found in long term studies of classic LCIS, that the cumulative risk of invasive breast cancer after an LCIS diagnosis was very roughly 20% (range 8.3 - 25%) 25 years after their LCIS diagnosis.  We don't know anything about the LCIS women's family history or if any were treated with radiation, which would be a greater risk factor than LCIS.

    http://jco.ascopubs.org/content/23/24/5534/T2.expa...

    These numbers are extremely small, so you have to take it with the proverbial grain of salt.  

    But, from these numbers, it certainly looks like the majority of classic LCIS women never go on to get invasive breast cancer.   This is why they usually call classic LCIS as a 'nonobligate precursor'.  This means that classic LCIS usually just  stays as classic LCIS, but in some number of cases, the classic LCIS may grow into invasive breast cancer. (PLCIS or LCIS variants may be in a different situation.)

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  • Emma8
    Emma8 Member Posts: 22
    edited October 2014

    Dear Carol and Leaf,

    Thank you very much for your comments.  Leaf, thank you for all the references.  You have clearly done all your homework and sounds like you have arrived at much the same conclusion that i have over the years, having also read everything I can- that is, there is really very little that is definitively known and understood about LCIS.  Many of the recommendations we all get from different doctors are not based on evidence-based medicine, but rather on clinical experience, personality, risk aversion levels etc.. and I think the decisions we all make are similar.Leaf, you opted for Tamoxifen and Carol and I went the surgical route.  I suppose I had thought I had done the most I could and I could pretty much close the book on this and just live life.  Now, I have my surgeon and a top oncologist who think my risk is very reduced and i dont need Tamoxifen.  But, 2 other top oncologists and a surgeon think i should take it- their opinions based on seeing a path report of what was just found in me.  I had asked about tamoxifen after the bilat mastectomies 7 years ago and all said not necessary.  Now, seeing what really they should have presumed would be there,some have changed their opinions.

    I think surgeons believe that most of what they leave after mastecomies is fat.  They need to leave some subcutaneous tissue to keep the breast skin alive and allow reconstruction.  But, in thin women particularly, the breast tissue is likely to reside just under the skin and more might be left. Surgeons generally cite a 95% reduction in risk associated with prophylactic mastectomies and my surgeon claims she has never seen a case where someone comes back with an invasive cancer. Still, in my case, I have to assume more of the same sort of tissue resides under the rest of my skin as only a few cms were removed and I had particularly florrid LCIS with really no normal breast tissue to speak of.  Knowing it is probably sitting there in me, i can't help but think it would make sense to take the Tamoxifen.  I guess I like to feel I've done everything possible.  That was I promised my children 7 years ago. 

    Also, being truly honest, I hate the idea of rushing menopause by taking Tamoxifen.  I'm almost 52 and still not in menopause.  I know that is not going to last long and hardly a sensible reason to avoid a potentially life-saving drug...if it is not overkill.  Just wondering if anyone out there has been told to take Tamoxifen after the prophylactic mastectomies for any reason?

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  • iammommy
    iammommy Member Posts: 213
    edited October 2014

    I was told by my breast surgeon after my pbmx for classic LCIS that it wasn't necessary. He said he has never seen a case of invasive breast cancer after a pbmx for classic lcis. He also said he couldn't say the risk was 0. Tough call. 

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