Cancer after LCIS and Bilateral?

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cleomoon
cleomoon Member Posts: 443

Has anyone here been diagnosed with breast cancer after having a bilateral due to LCIS?

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  • beacon800
    beacon800 Member Posts: 922
    edited March 2013

    Looking forward to responses to your post.  I have not seen this happen here, but it could have happened, so we'll see.

    Some other BCO members have posted research stats on this and it is a very rare event.  I think Leaf posted some stats??  Anyhow, we'll see if anyone had this happen.  Hope not!

  • carol57
    carol57 Member Posts: 3,567
    edited March 2013

    The Chuba study includes a look at the incidence of IBC after mastectomy following LCIS diagnosis.

    The study found that the risk of getting IBC in the same breast (the ipsilateral breast) where the patient had a mastectomy is less than 1% over 25 years.  The IBC risk in the contralateral (other) breast (obviously for someone who had a unilateral mx) is 11%.  So, for those of us who have bilateral mx, when pathology finds nothing more sinister at the time of surgery than LCIS, this particular study places us in that 1% category.

    A few weeks ago, I reviewed that study with my oncologist as part of our discussion of what, if any, follow-up I need after my bmx 20 months ago. She agreed that the risk is very remote, and she recommended an annual professional 'breast' exam (I had diep recon) after a one-time baseline MRI, which I just had. The point of the MRI is simply to map my little lumps and bumps (small bits of fat necrosis, which is quite common after autologous flap recon) for future reference in case anything pops up under the skin. Her opinion is that the skin is where there might be the most theoretical risk because no breast surgeon can remove every single cell, but after LCIS, post-mastectomy risk is very, very remote.  If anyone else's onc has a different perspective, it would be very interesting to hear their rationale.

  • leaf
    leaf Member Posts: 8,188
    edited March 2013

    I agree with Carol's interpretation.  The Chuba study is by far the most data we have on LCIS patients.  Unfortunately, we don't know very much about the family histories of the women in the Chuba study: we don't know if these women had a stronger family history and thus be more at risk for a BRCA or as-yet-undiscovered mutation, or how many took estrogenic hormones (birth control pills), antiestrogens, etc.

    Clearly more studies are needed, but I don't expect to get firm answers anytime soon: LCIS is an unusual condition.

    The incidence of cancer after prophylactic mastectomy when a person has already been diagnosed with a BRCA 1/2 or invasive breast cancer may be another story.  BRCA 1/2 women are at higher risk than LCIS women (at least LCIS women with no significant family history.)  So women with LCIS and a BRCA 1/2 gene (or other known or unknown hereditary single gene mutations that puts one at higher risk for breast cancer) may be at higher risk for breast cancer even after prophylactic mastectomies.   The picture gets a lot more complicated, because some women get LCIS along with DCIS or invasive breast cancer.

    Most studies that look at prophylactic mastectomies are looking at women with BRCA 1/2 mutations, or women who had breast cancer in the contralateral breast.   But, at the other extreme, 'prophylactic mastectomy' also includes women who have metastatic breast cancer but have the 'good' breast removed.  These women obviously are at high risk of dying of breast cancer.

    This Cochran study looked at women who got prophylactic mastectomies (due to various reasons, not just LCIS).  http://www.ncbi.nlm.nih.gov/pubmed/21069671  They conclude While published observational studies demonstrated that BPM was effective in reducing both the incidence of, and death from, breast cancer, more rigorous prospective studies (ideally randomized trials) are needed. BPM should be considered only among those at very high risk of disease. There is insufficient evidence that CPM improves survival and studies that control for multiple confounding variables are needed.

  • Crescent5
    Crescent5 Member Posts: 442
    edited August 2013

    cleomoon wrote:

    Has anyone here been diagnosed with breast cancer after having a bilateral due to LCIS?

    Yes. I have. =(

  • Annette47
    Annette47 Member Posts: 957
    edited August 2013

    A friend had a BMX 8 years ago due to a small area of DCIS.  LCIS was also found.    She was recently diagnosed with Stage 3 ILC, so yes, it can happen.

  • cleomoon
    cleomoon Member Posts: 443
    edited September 2013

    Thank u for sharing with me. I am confusedFrown If ur friend had BMX then how could she get ILC?

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

    Cleo, no matter how carefully a mastectomy is done there are always tiny remnants or bits of breast tissue left, so that is how.

  • Annette47
    Annette47 Member Posts: 957
    edited September 2013

    Yes, just as Melissa said.    Her doctor told her the odds of that happening were incredibly small, but obviously not zero.   The take-away message should be that even if you choose that route, be vigilant with self-exams and other screenings as while very rare, it can occasionally happen.

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